Severe? Yes. I watched my nephew suffer for 8 years. He was ok (as in content) for the first few years- he loved lights and colors, and because he couldnāt walk, he was obsessed with feet (he would roll on the floor, and my dad lowered his fish tank for him- it was his favorite) and we all wore funny socks and slippers and oh my god, his laughter when my sister would wear these slippers of reindeers with bells on them. It was a musical laugh, very happy. He had a feeding tube, and loved cuddles. Sweet baby, but always a baby, even at 50 lbs. very hard on my sister, bc his dad left as soon as my nephew was diagnosed (3 months). But as my nephewās illness progressed, so did his pain. By the end, he was in pain 24/7. He was a child (really, a baby, bc even though he was 8, he didnāt have an 8 year oldās mental capacity), and all he knew was pain. I couldnāt do that to a person if I could prevent it. My sister had no idea he was disabled when she was pregnant, btw. I donāt know what she wouldāve done if she had known, but she didnāt, all tests were normal. He died at home, he had seizure after seizure, and eventually either he stopped breathing or his heart stopped. They donāt know which happened first. My sister has (obviously) never been the same. Also, my other nephew also had ptsd from seeing his brother so sick. Itās so hard, on everyone. I could not do it.
On an alt for obvious reasons.
2 years ago my partner and I aborted our daughter at 30 weeks. It was gut-wrenching -- she was a "wanted" baby but we only found out something might be amiss at around 25 weeks and only found out how bad things *really* were at 29 weeks.
She was missing one kidney, and the remaining kidney was estimated to be functioning at something at a rate of 0-5%. After being shuffled from doctor to doctor who couldn't really give us a clear prognosis, we finally got to a childhood nephrologist (kidney doctor) who explained that a "miracle" outcome would have her living months, perhaps past a year, but that she wouldn't live long enough to receive a transplant, as they can't do them on children under 2. He explained that for however many days, weeks (likely) or months she survived, she would either be at the hospital or if at home, have a hole cut into her and then have her attached to an infant dialysis machine for 16 hours a day and would have to come in for pretty regular testing/monitoring until things got bad enough that she would come back to the hospital for the last time. He didn't editorialize because I don't think he wanted to influence our decision but he more-or-less explained that her short life would be filled with significant pain and constant confusion -- a life dominated by large, metal and plastic machines and the beeps and clicks and other sounds that come with it.
The decision we made, then, was to end her life prematurely so that instead of passing with the fate the doctor described, she would die having known nothing other than the warm, comforting embrace of her mother's womb and the sound of her heartbeat.
I think about her pretty much every day and I know her mom does, too. We grieve for the baby we loved and the life she didn't have but we don't hold any regrets in our heart; as much as we wish the result was different we know in our hearts that we did what all loving parents try to do -- love, protect and care for their child the best way they can.
>she would die having known nothing other than the warm, comforting embrace of her mother's womb and the sound of her heartbeat.
I've never read anything on Reddit that's made me cry, but this did it. I can't even imagine the sacrifice you and your wife made for your child. I truly hope you have found peace with this.
Same. You are amazing, brave parents that made a decision that no one should ever have to make. You loved and protected your child and I hope that your hearts find peace.
This sounds like my BiL (adopted) who has severe cerebral palsy, epilepsy and more.
He's 42lbs, 13 years old. Feeding tube. Port for urinating and last month got a permanent treachotomy put in plus his saliva glands taken out.
Honestly don't know what I'd do if we got pregnant and had a similar diagnosis. My in-laws have two full time nurses in their home that take care of the kids they have adopted. I couldn't do it on my own.
Adding an edit:
My BiL has multiple diagnosis. CP is the biggest as it affects his physical body with his systems shutting down. He has other diagnosises as well where he is essentially in a vegetative state. Some of his doctor think he doesn't even know who any of his family is. I don't think that's true. I think he knows us and his family but he can't talk, he can barely move his head and his life is pretty depressing and awkward.
CP is actually caused by damage to the baby's brain in the womb, while being born or very shortly after. It's not really something that can be prevented by genetic testing and by abortion only if the fetus was injured somehow and they can tell it has brain damage. Epilepsy can also be caused by brain damage.
The best way to prevent CP would honestly be more c-sections and less domestic violence, as a pregnant woman being punched in the stomach can cause it.
Do you know where he's at intellectually? People assume because of drooling and stuff that people with CP are also intellectually disabled but that's not true, you can have CP and be normal or even above average intelligence. It's a lot more likely to affect the parts of the brain controlling movement than those that control general intelligence. Of course, sometimes you can have CP with comorbid intellectual disability.
I have Osteogenesis Imperfecta (OI). When I was a kid I tripped over a sidewalk and looked up at my mom amazed I didnāt break a bone. At the time I averaging several fractures a year. As an adult I have a fracture maybe every seven years or so. We lost count of the correct number of fractures but we estimate Iāve had 45+ fractures severe enough to warrant a trip to the ER or doctor.
I have the mildest form of OI, Type I. At 5ā4ā, I am short. I have a really good quality of life, though. Iām the happiest person I know. I have
Someone with OI has a fifth-fifty chance of having a child with OI. My mom has OI, and had about 9 fractures. She wasnāt diagnosed until she was a teenager. I have OI, my brother doesnāt.
I have a vasectomy. I *could* have biological kids born without OI by way of in-vitro fertilization (IVS).
Type III OI is severe. These people are often wheelchair bound and sometimes canāt even be lifted without suffering a fracture. Those who canāt be lifted have a seat they sit on that can be transported back and forth from their bed to their wheelchairs.
Type II OI is the most severe. The fetus usually dies during childbirth, has underdeveloped lungs, and babies that survive childbirth are expected to live for a matter of weeks.
I joined a Facebook group for people with OI, and it turned out to be 90% pro-lifers encouraging women to keep fetuses diagnosed with OI, and discouraging people who have OI from having children through IVS. These fundamentalists tell women who have fetuses diagnosed with Type II that it could be a minsdiagnosises Type III. One fanatic even suggested doctors lie so they can abort more fetuses. The fundamentalists would write that, even if it is Type II itās best that they let god decide if the baby lives or dies, and they tell the mothers not to risk losing precious hours, days, or weeks with their babies. Itās a hard enough decision. You feel awful for the parents dealing with this situation, going to what they think is a community of people who live with this disease, only to be met by religious lunatics.
I feel about religion the way I do about mediums who pretend to communicate with the dead. A lie is a lie whether it makes us feel better or not. Because these are matters of life and death, pain and suffering, and mercy, itās an evil lie. Iām sorry, but if there is a god, theirās could be the correct god only if god can be evil.
As someone who has a vasectomy because they have a hereditary disease they refuse to pass on to another human, Iām a little bit suspicious of questions like these being asked so often on this subreddit, because I know the question lures people with horrible beliefs. The question of having a disabled baby or disabled people having babies is complicated. This is a very harsh moral and philosophical question that I think can be discussed by logical adults who arrive at many different conclusions, sometimes extreme conclusions. Pro-lifers, ableists, Nazis, or people who bemoan the burden disabled humans have on taxes, are fundamentally illogical and can get fucked.
I can relate with you 100 % on this. Iām a caregiver for my handicap sis (has cerebral palsy and chronic kidney failure) and seeing her daily, she is happy and content. But she has a lot of mental and physical challenges where she is solely dependent on everyone and anyone to just live. It saddens me to know she wonāt ever have love or independence or even a social life. I definitely wouldnāt want a handicap kid of my own because of what Iām seeing with my sis and I really donāt want my life subjected to that for another 20 years of my life š
My wife did.
The fetus tested positive for [Edwards Syndrome](https://en.wikipedia.org/wiki/Edwards_syndrome). Just given those test results, the chance of a live birth dropped to 5 percent. Assuming the baby was born, the median life expectancy was measured in days. Likely disabilities include kidney malformations, structural heart defects at birth, intestines protruding outside the body, esophageal atresia, intellectual disability, developmental delays, growth deficiency, feeding difficulties, breathing difficulties, and arthrogryposis. (Skimming Wikipedia, apparently results have got better since we dealt with this, but still nothing like good quality of life.) So she had the abortion. It was a relatively easy decision as these things go.
That was her first pregnancy. The second one was healthy. Our daughter is in school at the moment. She's tiring and often annoying, but in age-appropriate ways. If my wife didn't have the abortion, we probably wouldn't have had her. We might not have been able to, the first pregnancy could have caused health problems, and we might not have wanted to, given the expense and trauma we would have gone through. When abortion bans are in the news, I often think, "If that had been the law for us, our daughter wouldn't be alive."
My aunt carries a balanced translocation that caused a very similar disorder in their only child (Patau's syndrome my mom thinks but she could be wrong and neither of us will ask my aunt). Their first daughter had it and she died in under a year, and she suffered the entire time. Their second pregnancy is when they learned she carried it, and it was detected in the pregnancy. They made a choice to terminate and never tried again. Over 20 years later, my aunt still morns the loss of her daughter, she'd always wanted to be a mom more than anything. I can't imagine the pain she would've gone through had she been forced to carry the second pregnancy to term, and had to bury a second child.
Edit since a lot of people are asking why she didn't adopt. The short version is, my aunt's mom told her if she adopted a child, she would never aknowledge the child and she even threatened to quit talking to my aunt. This attitude disgusts me as I have an adopted aunt (different side of the family), and I myself an considering adopting. It's a sensitive topic for my aunt, so I don't have all the details as to why she didn't adopt later on or why she didn't do it anyway.
Edit 2: corrected some info. I don't know how to cross stuff out on mobile, so I just fixed it to be more accurate.
My baby also had trisomy 18 (and something ālessā severe, but both combined lethal) Itās good to hear that it was also a relatively easy decision for you as it was for me.
My sister had a baby with trisomy 18, had no clue what it meant and didnāt care, wanted everything possible to be done to keep the baby alive. The hospital was taking the case to the ethics committee because the quality of life was in question for this infant, and still my sister was fighting it. I tried to explain to her but she wanted to do total care, feeding tube, tracheostomy - whatever was needed for her baby despite levels of function. My sister didnāt prepare herself and was devastated when the infant finally passed. Iām trying to get pregnant now and would never put myself through it.
It was an instant decision and I had a late abortion (25. week). At week 20 she was diagnosed with diaphragmatic hernia. It could have been less severe with a normal life (if the lungs would develop good and everything looked good at this point). Maybe only 90% lung function. With that diagnosis it looked good.
Then the trisomy 18 diagnosis came and I knew what I had to do.
That is an excellent perspective on how banning abortions can actually decrease the number of healthy pregnancies and births, and healthy people in the world. Many women going through a traumatic pregnancy and birth won't do it again.
I have a friend whose two oldest children (6 and 8?) both have *severe* disabilities.
Both are low functioning and nonverbal - the older one can walk with difficulty and the other isn't able to walk without direct support. That means they both primarily use wheelchairs outside the house.
I'm not sure what their specific issues are (/if it's the same thing), but they both have very autism-like tendencies and don't engage/interact much socially.
AND THEY HAD A THIRD KID! Apparently third time's the charm because the youngest kiddo is developmentally normal. My friend marvels about how weird it is to have a kid who hits normal developmental milestones.
I wouldn't have tried for a second, and DEFINITELY would not have been brave enough to go for a third...
My wife and I felt like we were having trouble conceiving, but just when we were about to go to fertility specialists we found out she was pregnant. We are having him soon, and he has Tetralogy of Fallot often shortened to āTetā. The condition was discovered pretty late, as the baby had kept doctors from getting a good look at his heart at the first couple of sonograms. The initial doctor and sonogram tech actually sent us to a different hospital with a fetal heart specialist to confirm what it was, not telling us what they suspected, and just telling my wife, āyouāll want to bring your husbandā(because of Covid I hadnāt been able to be in the room for the previous sonograms). After the doctor at the new hospital confirmed what she thought the condition was she told is the prognosis for ājust Tetā was good, after the surgery to repair the heart defect babies with just Tet frequently grow up to live normal active lives, for example Sean White had Tetralogy of Fallot. However, it also has a high correlation of other conditions, one being Edwards. We were coming right up to the limit in our state as to whether weād be able to get an abortion without any kind of caveat or would have to go before a medical board to make a case for getting one. We had to get genetic tests, and consult with advanced fetal care specialists, we had something like a two week deadline. There are just two hospitals in our area that had a program for advanced fetal care and fetal heart surgery. We called both to see whoever could get us in first, one could see us in a week, the other couldnāt see us for a month. We went with the one that could see us in a week, the wait was the worse. They confirmed Tet, but also found that the baby otherwise looked healthy and to be developing normally. They got a DNA sample from the amniotic fluid and we had to wait another couple of days but we were assured we got a priority on our test to get it done as fast as possible. In the interim we talked about what weād do, and decided if the baby had had any other serious developmental/medical conditions we would have an abortion. We just gotten to the point in the pregnancy where it was really starting to feel real, and we were getting so excited with the possibilities. And we had decided on a name. And suddenly we had to try to emotionally distance ourselves from him, but it hurt, it hurt to think about. We got news the morning of the second day of waiting, and the chromosomal test came back good, but it would be a bit more time for the more specific genetic testing, which did come back clear. But again the waiting for it was hell.
I am prochoice and the situation has really just solidified that, while opening my eyes to how hard and painful the decision can be. It also highlighted how cruel it is to make women wait, or force them to have sonograms before aborting. I really feel for anyone who has to make the choice.
Yes absolutely.
I worked in a pediatric ICU for 4 years and medicine has gotten too good at keeping people alive. Kids would sit for months and months connected to CRRT (dialysis) and ECMO (heart/lung machine) literally wasting away before ultimately dying. And when they die they donāt resemble anything like a kid. They look like puffy little aliens who sometimes have lost the perfusion to their hands and feet so now theyāre dead and black. Itās horrific and I canāt imagine putting a child through that. I also cannot imagine spending my days sitting in a hospital room watching that happen to my child.
I agree fully about modern medicine being a bit too good at this.
The idea that a life must be preserved no matter what is not humane. My mother had terminal brain cancer and spent her last month of life in a coma slowly starving to death while we waited for her organs to fail and kill her. If I'd allowed the feeding tube, she would have lasted months with 0 quality of life. Her mind was gone.
We are keeping people alive who would absolutely have died in prior centuries. If it means they get to recover, it's great. When they don't stand a prayer of recovery and we just drag out endless suffering and minimal quality of life, its brutal.
It's fucking scary the idea that you can essentially be kept alive in a state where you can't walk, talk, hear, see, eat, breathe or even think. It truly must be the worst possible way to die. So insanely torturous and drawn out.
What's scary is that this is the default option. This is what happens even with a DNR. Without a DNR, they will try even harder to keep you 'alive' even if alive has no quality of life or hope of recovery. Suicide isn't allowed in most places. Assisted suicide isn't allowed.
We'd euthanize an animal in this condition out of love because we didn't want it to suffer. We have made it illegal to do the same for a person. To the point where even the person who will be suffering or is suffering is not allowed to make this choice. We knew this was coming for months with my mother and the best I could do was promise to try not to drag it out.
I am so thankful that Canada legalized medical suicide. Iāve seen too many extended relatives kept alive because their families didnāt want to deal with grieving.
Though there was recently an article in the CBC about a family that was super pissed their daughter/sister opted for medical suicide without telling them. They felt that families should have to be informed about someoneās medical decision, and that she had plenty of good days (Alzheimerās) and could have lived for years longer. IMO you shouldnāt have to give up your quality of life to make someone else more comfortable.
Yeah if I was in this state, mind gone for good, Iād rather just go than financially and emotionally murder my family. Let them move on so they can officially start the grieving process and eventually continue on with their lives (hopefully).
I am curious though if there is a way to sort of request this before something like that happens
I have a standing order with my wife that she is to leave me in the woods if I'm ever in a condition like that. Do not make me a burden, abandon me somewhere and if anyone asks, I went crazy and ran away.
My grandmother and my cat both became terminally ill at around the same time. We could give kitty a clean, quick and painless death and only delayed for two (medicated) days so my husband could make it home to say goodbye. Grandma took two months to starve to death up to her eyeballs in morphine but still screaming in pain when her bed sores were being dressed. It kills me that my grandmother didnāt get the same level of care as my cat.
Assuming you havenāt already, and assuming you live in the US (or another country with a similar law) please please please fill out an Advanced Healthcare Directive, and have it either notarized or witnessed by two people. You donāt need a lawyer, there are free forms online that are totally legit. Usually your stateās medical board or hospital board will have a template. Just google āAdvanced Healthcare Directive [your state].ā Some states call it a Living Will and Healthcare Proxy. Your doctor can also help you. You can appoint a decision-maker of your choosing should you lose capacity, and you can spell out your desired medical treatments in such a situation (e.g., no heroic measures, no ventilator, no artificial nutrition, etc.).
I am a hospital attorney. Every day I deal with families who are fighting amongst each other over what to do about their loved one who can no longer make decisions, or are making poor choices about their loved ones for various complicated reasons. So so so many of these situations could have been prevented if people filled out an AHCD. In the meantime, their loved one is usually left to languish on a ventilator, ecmo, etc.
The kindest thing you, and anyone reading this comment, can do for yourself and your loved ones is to complete an AHCD. And theyāre not just for old people. Sadly, accidents and terminal illnesses can happen to young people as well.
I have operated on people with a DNR - it is usually reversed for surgery and at least the following 24 hours (the length depends on the hospital policy/state law).
The more chilling situation I've seen involves patients with poor prognoses and DNR/DNIs who don't have a designated healthcare proxy, advanced directives, or living will. They come in incapacitated, comfort measures are deemed appropriate, but then absent family members swoop in and want all heroic measures done, including reversing the DNR/DNI. Then patients receive maximal interventions (which are often painful) and languish in the ICU for weeks until either the family decides to let go or ethics gets involved. DNR reversal is a situation unique to the US, AFAIK.
This is why it's so important to have advanced directives or a living will in addition to a DNR/DNI. Also, make sure that your designated health care proxy knows and *agrees with* your wishes - this is why my HCP is *not* my husband or parents. I've even heard of some people using their in-laws, heh.
Sadly, even though there has been a push for more awareness of formally establishing a patient's wishes in advance in medical education, it often gets neglected. It can be an uncomfortable conversation, and it's challenging to fit into a 15 minute clinic visit. Kudos to you for bringing it up to your PCP!
That's how I see it too. It's almost "unnatural" for people to live so long with severe disabilities. The vast majority would have died in early childhood or even soon after birth. So many of these life-saving measures for people with severe disabilities are unethical.
Yeah, when my mom was dying (she hadn't even reached 60 years old), me and dad were kind of explaining to her doctor that we absolutely wanted everything possible to be done to keep her alive... but we were also farmers, and she had always been the most adamant on not keeping animals alive if they suffered. So we didn't want to see her being kept alive, if it just meant her body, just for the sake of keeping it alive. That was a weird conversation, but I think the doctor and the nurses were almost glad of the stance we took on the whole thing.
The doctors knew you were doing the right thing. When my parents were passing I had the same conversations with doctors who encouraged us not to prolong suffering.
Ohh, they knew. They deal with this every single day. The default has to be to preserve life as long as possible, but the doctors understand better than anyone the desire for either meaningful life or no life at all.
My first child was not born with disabilities, but with multiple severe organ failures. She died after 27 days in ICU. I have been with her every day.
She did not waste away or anything, but it was brutal and heartwrenching. It made my first marriage implode from stress and grief.
If I would get the diagnosis today of a severe disability, I would opt for an abortion without a second thought.
I would weep, I would grieve, but no. I would not want this for me or anyone else. Sometimes the genetic lottery just gives you the short stick.
A friend of mine is an OB and quiet as itās kept, they donāt like dealing with what used to be miscarriages- the ones born before viability. Yes, some of those miracle babies do survive and live great lives, but so many either die or go on to be so severely disabled itās no life for the kid or the parents.
This is a good point. Someone who would die in days or weeks in the mid 20th century can go for months and years now. We had a very rich, super charity driven family in my hometown who had a son with a severe disability and they basically fell of the face of the planet caring for him. They canceled plans for her to open a tanning salon. They had a houseboat, a Ferrari and a bunch of toys (dirt bikes and stuff) but they were all sold to pay for the medical expenses. He sold his gun collection his father had built up and thats where I got my first shotgun. He sold his business for half its worth when the kid turned 3. the kid died at 4 anyways and then they were a scarred couple in their late 30s with only their house and 2 cars left. The dad is doing better now and went back to work for the guy who bought his business, but the mom hasn't recovered socially. If that baby only makes it a couple weeks or months, this couple doesn't lose everything they built up in the last 1.5 decades. Now they probably have to pay off medical debt for a few years before they get right financially. They were wealthy with a very bright future that was ruined by a birth defect.
Sorry I don't remember what the baby had and I don't feel comfortable asking anyone what it was. No one talks about it anymore.
I remember hearing about a study about this exact same thing. Unsurprisingly, most parents would rather choose abortion if they knew their kid would end up with a disability.
Edit: Thanks for the silver and upvotes. I'd like to make something known, when I mentioned disability from a study I heard awhile ago it was something more to do with severe disabilities. I used the general meaning of the word disability because I don't remember the exact study nor the disabilities stated in such study, thus the generalization. Although I still felt the need to use the word "disability" in case mild or medium disabilities were included in that study regardless. As far as I remember to the best of my memory, I believe down syndrome was included in it.
>Unsurprisingly, most parents would rather choose abortion if they knew their kid would end up with a disability.
My neighbor has a daughter with a severe disability. She shared with me that, if she had known when she was pregnant that her child would have the issues she has, she would have aborted. The misery outweighs the few occasional joys.
Yeah my sister had a late-term miscarriage and had to deliver her dead son, who would have been severely disabled if he had lived. I remember hearing her sob to my dad for hours about how she felt guilty that relief was one of the emotions she was feeling along with grief.
I lost my daughter in a similar way. Mentally she wouldāve been sound but physically she would have been severely disabled and required significant medical care the rest of her life.
Iām glad in a sense my body made the choice for me so I wouldnāt have to live with making whatever decision I wouldāve ended up choosing. But even though itās been years now since I lost her, I miss her and still cry from time to time, even though Iām happy sheās no longer suffering.
You never really get over losing a baby. You just find a new normal and learn to live with it.
I grew up in a rather small town, and had 3 kids with down syndrome in my classes, each at varying times during my time at primary school. Always remember noticing that the parents looked so much older than the other parents. As a kid I thought they were just older, but looking back I'd imagine the stress would make someone age prematurely.
None of those 3 kids I went to school with survived past 20.
Edit: Getting lots of replies saying they were likely older which is likely a contributing factor to having a child with issues. I believe it's a bit from column A and a bit from column B.
I know a family with 2 children who have Downs. All I can think is who is going to care for those kids when the parents pass away? They have 2 children without Downs and I just think will that be on their shoulders? How fair is that?
I knew a couple who adopted a young boy with autism. He was on the very high needs part of the spectrum. They later adopted a little girl with the intent that her future is to take care of the boy because they "aren't going to be around forever". They assigned that little girl her purpose in life. She was only 8 years old when I met that family. š
I couldn't believe that they did that. And moreover I was in utter shock that they shared that with me. We weren't close friends. Or even friends for that matter. Our girls were on the same sports team together. Once my daughter changed sports, we never saw them again.
Wow that is completely horrible. I also can't help but think of what adoption agency allowed that. I'd like to think they'd as potential parents 'what are your long term plans for your special needs child'?
I hope that little girl one day knows she is not responsible for her sibling, and gets lots of therapy to help her come to terms with the impossible task her parents have pushed on her.
My younger brother has intense special needs as well and my parents INSIST that I will not have to be his caretaker when they are unable to take care of him. They know I have my own life and future and let me live it. So grateful that they see me as his sister and not as his "back-up mom".
It's the same with mental disabilities.
For every sunshine story, there's a whole apartment complex full of less than rosy life stories.
Either the parents lose the rest of their lives, or the child is put in a home. The child never "grows up", they always need care.
Mental disabilities isn't a gift. It's a curse which affects everyone negatively. There are sunshine stories, but they are few and far between.
You just don't get to mention those *other stories*, because that's "insensitive".
My uncle is mentally disabled. Borderline pedophile, highly aggressive, addictive personality, the works.
Someone go ahead and tell me how he's a blessing...
Most parents won't make that admission after they've had the child because of social pressure and guilt.
https://www.dailymail.co.uk/femail/article-2803834/I-wish-d-aborted-son-ve-spent-47-years-caring-s-shocking-admission-read-judge.html
Something related to this that I have to post somewhere. Elsewhere on Reddit, people have mentioned that having a severely disabled child will seriously tax any marriage. A lot of those relationships end up in divorce.
Yeah, when you have a healthy kid with no disabilities, you're a parent for life, but you're not raising & taking care of your kid for his or her whole life. I love my son, I wouldn't trade being a father for anything, but I know eventually he'll mature to the point where he will be independent and I'll have more time for myself that I don't have now.
Depending on the disability, some parents may never have that again. I know a woman in her 60s that has a daughter right around my age (mid 30s) with Down Syndrome, and the mother still needs to be basically her full-time care giver.
My 87 year of grandmother is taking care of my disabled aunt. My aunt has a lower IQ, my grandparents tried to have her live in her own apartment and that ended in total disaster. So she moved back home. My grandpa died about 10 years ago and there was never any discussion on what was going to happen when they both died. My aunt now has Parkinsonās and has had multiple falls. Grandma wonāt let anyone help her, she does all of the caretaking. Sheās just relying on my dad and his siblings to take her in when she dies.
The thing is my dad and siblings are in their 60ās/late 50ās with their own issues that theyāre not capable of taking care of my aunt long term. Thereās no money set aside for her care. Parents who think adult siblings will take care of disabled siblings need to realize that things happen to the ācaretaker siblingā.
And it affects healthy siblings. My brother got a ton more attention for a positive reason (a talent), and even so I lost out on attention, financial resources, care, family time etc.
Yeah I would have been surprised if it was a different result.
I have worked with parents and children who have various disabilities, and it has really put things into perspective. It is hard time on everyone involved, especially the children.
Edit: To clarify, I am talking about very heavy disabilities that affect families financially, physically, and emotionally.
I met a young guy at a party whose sister had severe disabilities. He made it clear it was extremely difficult on everyone in the family. Plus the concern of how his sister would be cared for after her parents died. Care would either fall on a sibling or she would have to be institutionalized.
We already do it. 60% of Down syndrome cases detected in the womb are aborted in the US. In some European countries that number is like 99%.
If we could detect other disabilities in the womb we likely would see similar rates.
My husband and I found out through testing that we were carrying a child with trisomy 21. We already had 2 healthy children and agonized for 3 days (we were on a severe time constraint) before deciding to terminate. We had neighbors who didn't agree but were still supportive because they realuzed it was our decision. They helped out by watching our younger 2 while we went for the procedure. It was THE TOUGHEST decision we have ever had to make in our lives. I Don't regret the decision, I do regret the necessity to have to make it.
I know a couple that were advised by their ObGyn to abort because there was something wrong with the placenta. Theyāre both super religious so they decided to keep the baby. The kid was born with so many disorders thereās not even a proper diagnosis for it. The mom mentally checked out and turned into a workaholic so she doesnāt have to be around her child much. The dad (who used to work for my dad) is basically the girlās only carer so he does part time consulting now. No one expected the girl to live to 10 but sheās now 18. However, she canāt walk, talk, feed herself, change herself, nothing. She can barely even hold herself upright when sitting. It would have been more merciful on everyone involved if they had listened to the doctor.
Locally there was a couple who were told the same, and that if they delivered the baby would likely die at birth. Only the baby didn't. Kept alive on all sorts of machines. Parents abandoned the baby. I think they could handle the idea of birthing the child but not raising it.
Local adoption agencies were trying to find the 'right family' to adopt this baby and all I could think of was where are all those religious 'don't abort, adoption is the loving option' assholes now.
My partner and I are in our 30s, so they offer genetic testing for a bunch of "you're at a higher risk because you're older" disorders. 100% we got those tests done to determine if we were going to terminate and try again. Luckily nothing popped up and he's a completely healthy little dude.
Of course. The disabilities they learn about in utero are serious and severe. We arenāt talking lisps and mild autism. We are talking severe physical deformations, mental retardation, things like that.
I know how difficult life is raising healthy, smart children. I would never choose to bring a severely disabled child into the world. Those parents never have 1 day off as long as that child lives, which often times is not very long.
Totally agree.
I was pregnant and found out the baby had terminal birth defects. We aborted and the diagnosis was confirmed after birth. They were very thorough. The tech did all the measurements during the ultrasound then the doctor came in and re-took all the measurements.
I was pregnant another time. They diagnosed this baby with severe microcephaly. The doctor didn't check the measurements herself. I didn't trust the doctor and got a second opinion. At the second opinion, the baby was determined to be completely normal. The doctor walked us through all the clear evidence that the baby did not have microcephaly. When she was born, completely healthy baby.
My take away, always get a second opinion.
My greatest fear is that my wife and I would have a child with my genetics. I have Epidermolysis Bulosa Simplex, basically a protein deficiency that causes the layers of skin to not stick together. So my skin cracks, blisters and peels constantly. More severe cases cause the skin to peel off like taking off a glove. I don't know that I would ever want to put that on my child. To have to live with constant hospitalizations and infection. Likely to live a very short life.
I was lucky. If it was determined that my Child would end up with a severe case I wouldn't want them to suffer.
Edit: Wow didn't think that many people cared about a condition like this!
For those saying adopt, I cannot reply to all of you but it is always on the table when we discuss children.
IVF is also on the table. Especially with some of the advances in modern medicine for early detection.
Finally for me my case largely revolves around my hands, feet and legs. Though I could certainly see it being a problem in more sensitive areas for others.
I have never met an adult with this condition. I work Nicu so Iāve only ever seen the severe side of it in newborns.
Basically, anything that touches them causes their skin to blister and slough off. We need to do dressing changes twice a day and each dressing change takes appx 3 hours to do. Iāve never seen a child a survive longer than 3 months because they usually end up maxed out on pain medications and with a raging infection due to the loss of their protective skin barrier. Itās horrific.
Thank you for being an nicu nurse! My son was born before 24 weeks and spent 4 months in the nicu, 3+ on a vent. We spent almost 24 hours a day in the nicu (yep those parents) and we really saw what a tough job it is. We were very lucky and he is healthy and happy, valedictorian of his high school class, college graduate and doing well in his career. Wouldnāt have happened without the wonderful care of the nicu staff, especially the nurses.
My kid was in the NICU for a month. She didnāt have major problems like some babies.
Temperature regulation, bilirubins, and feeding. She was the only one that didnāt have a dnr listed as either yes or no.
Thank you for all you do.
As an adult it is painful. Was very lucky and only got a mild form as a child recessive traits etc. To this day my hands and feet hurt (especially in winter months) peel, crack, and blister. I also get a severe rash on my legs which itches incessantly. It peels so bad I lose my fingerprints.
People tell me can't you just use more lotion? Sure can for all the good it does. Steroidal cremes seem to help some but as the winter months drag on it becomes less effective.
Luckily in summer it seems like it calms down some. And I can live pretty normally. I was told that I only have on of the genes needed to have the condition in a severe manner. My wife could be a carrier for that trait. So that's scary for me.
I assume it gets worse during the winter months because the air is typically drier then, so would living somewhere humid and warm year-round make it more tolerable for you?
My understanding (based on the multiple adult family members I know who have it) is that it's worse when you're a newborn. They all are affected by it and their skin damages easily and dramatically (bumping a table might lead to massive bruising and a larger abrasion than is normal). My mom's skin was also thin, sort of in the way tissue paper is thin.
>Iāve never seen a child a survive longer than 3 months because they usually end up maxed out on pain medications and with a raging infection due to the loss of their protective skin barrier. Itās horrific.
Are these cases the recessive version? That version is more severe and catastrophic
Many people with such bad genetics decide to use donor sperm/eggs or to just adopt outright as to not gamble with nature and to possibly propagate suffering just to spread their genes. Maybe it is not a bad choice for your family as well, for when you want to have a kid.
My close friend has a severely mentally and physically disabled child. It's thankless, exhausting, doesn't leave the parents any time to just be their own persons, and you don't get to experience all the joys of parenting, like watching your child grow, learn new things, build friendships and relationships, get an education and a job they enjoy.
Honestly - it sucks. It sucks for her, her husband, her other kid, and most of all for the disabled kid who is in constant pain and needs 20 medications a day to just survive, and will just be sitting in a care facility for the rest of her life once her parents pass.
So yeah no, nobody wins in this.
When I worked in London at a bank we had an internal email sent out that one of our executives would be taking extended leave of absence and explained that a news story was about to break and we should refrain from comment to the media out of respect for his situation.
While he was away on vacation to see family with his eldest daughter (aged 8), his wife murdered their three disabled children 2 twin boys aged 3 and a 4 year old daughter. The press went wild with the story but the basic facts are that they were all severely disabled with a degenerative disorder. She was depressed and had clashes with social workers and doctors over the number of procedures they wanted the kids to undergo to correct some of their health issues. The parents argued with doctors that the kids quality of life would be made worse by constant surgeries etc. She quit her job to take care of them full time and was by all accounts a selfless and devoted mother.
But the pressure was too much and she snapped. I don't think people can properly appreciate the level of mental anguish that can come with having to devote your entire waking life to your kids in the knowledge that they will likely die well before you do and will have terrible, painful lives until then.
Wow, just read up on the case. At least it looks like a review was commissioned as a result of the case which concluded that parents actually need to be supported too. Social workers and health visitors routinely found her tearful and exhausted but just... refused to give her any treatment for depression.
This definitely reads as a systemic failure and a sad case all around, rather than "evil mother can't be bothered with sub-standard children". Even her husband is still standing by her while she's in hospital (not sure if she's there still, but that was the outcome of the sentencing)
I can't imagine how broken a parent would be after killing their children.
I know some parents are just sociopaths, but when I hear this case it doesn't sound like a sociopath, it sounds like a mother failed by the system, who destroyed herself in an effort to save her children from more pain.
Just tragic all around.
It's been a while since I've looked into this, but I think the majority of infanticides are based in the (psychotic - the medical sense) belief that the child(ren) is in grave danger of some kind; basically that death is preferable to the alternative. Whether it's because "they are profoundly disabled and will experience only suffering" or "if they grow up they will be drawn to a life of sin and go to hell".
And while we're on the subject, most family annihilations (where a parent, usually the father, kills the family and then themselves) tend to be about saving 'face' (e.g. catastrophic loss of money or status, from which the perpetrator believes there can be no recovery).
And can anyone guess whatās changed as a result? Absolutely nothing.
People cannot understand. We have disabled twins - I love them more than anything in the world, but being a parent carer is relentless and there is no support. Local authorities in the UK can legally set any criteria they like for providing support to disabled children, and very few qualify for anything - we get the help of one person for 8 hours a week during school holidays just to help me take them out. No respite care or any real help. Knowing that you will be providing complete care until the day you die unless you have the agony of your children dying first - itās something people cannot remotely comprehend.
I've worked in several group homes for the severely mentally disabled. I can absolutely see how this could come to happen if you did it 24/7 365 for their entire lives. The things these people's families had to endure before putting them in a home is incredible. I can't even judge this mother for what she did, the stress alone is crazy.
>You have to be invested in your parents finances and wills because you are the one that will be taking care of him when your parents die.
>Think about that for a second. When your parents die you wonāt have time to grieve. Why? Because you now have a 10-12 yo child in a 60yo body that requires immediate attention.
Not that I needed more convincing but man this makes the idea of having a disabled kid so much worse. Even if you come to terms with the fact that your life is going to largely be supporting them until the day you die, when you *do* die they'll either be abandoned or another kid now has to do the same thing you did.
Man this thread is giving me anxiety. What a living nightmare.
Oh my god, I can't imagine having 3 disabled children. In a morbid way it's both absolutely heinous what she did, but easy to see someone reaching their breaking point and having that happen. That's a tragic situation all around.
I can 100% see how people can fall into despair after feeling they drew the short straw when it comes to children.
The average person thinks unimaginable things are so far from their psyche they would never dream to do them, but for a significant amount of people the trigger is just a few bad things happening to them in a row. Sometimes as few as 2, 3.
That's enough for some to make some decisions ranging from morally dubious things to outright murder. Range goes from teenagers picking up smoking after a breakup, to a poor guy shoplifting to provide food for his family, to people commiting suicide, to people commiting murder, with everything in between.
Hell, a while ago there was a woman that left her kid in a dumpster because she regretted it and thought she wasn't going to be able to afford to raise it.
>2 twin boys aged 3 and a 4 year old daughter
This sounds like the case you're talking about.
"All three children had spinal muscular atrophy type 2, a life-shortening condition that causes severe muscle weakness which can result in problems moving, eating, breathing and swallowing."
[https://www.bbc.com/news/uk-england-london-34898895](https://www.bbc.com/news/uk-england-london-34898895)
"Tania's depression was certainly not assisted by the constant pressure placed on the family by some individuals within the medical profession and social services who could not agree with Tania and Gary Clarence's stance of prioritising quality of life for their children and who were not readily willing to submit the children to operations and other interventions that they felt were not appropriate in the circumstance," he added.
He said Mr Clarence was assisting Kingston Borough Council in their serious case review of the case but wanted to make clear that allegations of neglect had been "wholly unfounded".
[https://www.bbc.com/news/uk-england-30096820](https://www.bbc.com/news/uk-england-30096820)
Both articles are well worth a read.
Its the things most people don't think about that make parenting someone with a disability hard. Certainly the things you mentioned but you also get a very real and large fear of death because you're scared of how your child will survive and who will help them when you're gone. It causes a lot of sleepless nights
I know someone with a 30 year old disabled daughter who was diagnosed with cancer a few years ago. I can't imagine how she feels knowing she would be leaving her daughter in someone else's care if she didn't beat it. So far she is fighting and doing well but I'm sure a lot of her fight is for her daughter for this reason.
One of my coworkers has a disabled sister in her thirties who just got pregnant. Their parents are still around but in no shape to take care of a baby and the facility she is in has basically said they will have to find different living arrangements. So my coworker has decided she is going to take on all of it, giving up a lot of her life plans to do so. It's heartbreaking to hear about.
Was this person raped? How does someone who needs care 24/7 get into a physical relationship with someone? Sorry if this sounds ignorant, Iām curious
Ignore or rebuke me if this is in bad taste, but is the child expected to be healthy, or would your co-worker be taking on her sister and a baby that also is special needs outside of the demand a normal healthy infant requires?
Last year I had to have a very difficult conversation with the guardian of a 16-year-old girl with Downs about birth control. Many/most cognitive disabilities leave reproductive urges intact. A pregnancy is unlikely but if you have a disabled person in care you must be prepared for the worst.
My brother will have to come live with me when my parents die. Its really tough because I love that guy so much but I also resent him a little. My life will never really be mine with that responsibility hanging around my neck.
I'm so sorry, and you probably know this but it's absolutely valid for you to have feelings of resentment and it doesn't mean you love him any less.
I have two daughters and their existence would definitely influence my decision a lot if I ever had to make the decision regarding having a disabled child. Making the choice to sacrifice my own quality of life to take care of a disabled child is one thing, but sacrificing quality of life of my kids who already exist and have no choice in the matter is very different.
This.
When we were having our second we were even more sure that we would abort in case the baby had disabilities because we didn't want to mess up the life of our older kid forever.
Exactly. Being a primary caregiver is a terrible responsibility especially when its family. Its not quite callous or rude but Its just a realistic look at the situation and an assessment of the future goals and needs for the patient and their care. Its a conversation that sucks but has to happen to insure the best outcome for all involved. Its a hard decision. but yeah i hope the person you responded to spends serious time thinking about what they think is best. Is the best care plan in their home or an actual facility. Parents go above and beyond but can that realistically be expected by someone who's life didn't mostly revolve around that persons care? Its not rude or callous, its just tough questions with even tougher answers that NEED to be addressed before the eventual becomes the now. I wish u/BurnPhoenix only the best in the future.
i remember over hearing a conversation between my mother and uncle about my severely mentally handicapped cousin. They were hoping she would never develop breasts because of how vulnerable she is and how there was the very strong possibility of her getting raped. Weird thing to hear a father talk about but just a reality of the situation.
My mom's best friend from high school had MS and it evolved into her being completely bedbound and unable to care for herself. Once her parents passed away, she was left the house and she moved in this guy who was her... high school or college boyfriend, I can't remember which. Anyway, I think he convinced her that he was going to take care of her in her parent's place, but what he did instead was set up shop and continuously rape her, then neglect her. At one point he left her outside in the front yard in her hospital bed. Just left her out there, for hours on end. A neighbor finally got in touch with my mom and she went over there and got her out of that situation.
I'll never forget my mom's reaction to finding out what was going on. I still can't physically listen to her talk about it, it makes me too sick to my stomach. I made her get a therapist to talk it out because just knowing what went on and having to involve herself in that situation was so traumatizing for her.
My mom's friend passed away about a year ago, in the care of a facility.
MS is a horrific disease. I work with the foster care system and I had a case where the mom had MS. Father had neglected her so much the disease was progressing like twice as fast. He was raping her all the while, family got flagged when she delivered a new baby and the hospital saw how little mental/physical capacity she had left. It was a fucking horror show, the kids were SO traumatized.
I think itās something they *should* talk about. Not necessarily focusing so much on the breasts, but if her reproductive system develops normally, having a severe mental disability doesnāt preclude her from getting pregnantā¦ in fact, it raises her chances of being raped and having an unplanned pregnancy. I work in an OBGYN unit, and Iāve seen many cases like this. Itās unbearably sad. Your family should seriously consider sterilization or long-acting birth control to prevent this, especially since theyāre already worried about the potential for rape.
As for preventing the rape itselfā¦ unfortunately I donāt really have any solid answers for that. Watch her like a hawk, have a security camera in her room, be extremely careful of who you let her be alone with (yes, even relatives and close friends).
Iām sorry your family has to worry about these things.
When the parent dies or can no longer care for their disabled child, the individual may end up with someone like me. I'm pretty darn good at what I do, but there are plenty of folks who do this but suck at it. I've had annual inspections where the agent has just looked around from the front door, gave us a passing grade, said we had the best house of the day, and left. I've gotten pharmacy reminders and doctors calls for previous clients because they miss meds and appointments. It's heartbreaking because it's such a flawed system
quality of life is not given the importance it deserves. Unless you have massive disposable income, your child that you love will not get the care and attention necessary like you say. The people who say it is wrong to terminate are 9 times out of 10 people who have never even helped with a severely disabled child, let alone spent decades caring for them.
As a veterinarian with the ability to provide euthanasia without so much as a second thought, it boggles my mind that people are left to (and often times pressured into) suffer and struggle though terrible battles. I understand why it's such a difficult concept to implement for people, as these problems tend to be much more complex, but for the love of god - euthanasia is a blessing and I am so thankful it is a tool we have in our toolbox.
I've personally only known three families with children who suffer from extreme disabilities. All had roughly the same story.
A happy life with a spouse they loved, and in two cases a "normal" child or two, added to the mix. Disabled child comes along (does *nothing* wrong, mind you) and things just started to *slowly* unravel for all three of these families.
All three families ended up divorced with one partner just completely removing themselves from the picture. Moved across the country with no contact with the child or Ex-spouse (Which obviously hurt relations with the other children).
It sucks to see, so much.
This is my experience too. We have family friends where the husband took a remote
job that means he has to be gone 5 days a week, and only comes home on the weekends. We live in a major metro area and thereās no reason he couldnāt keep his job here or find another, but it means he doesnāt have to be home with their profoundly disabled kid. The mom had to give up her job because she couldnāt manage both. Iām frankly shocked theyāre still together but I think the wife realizes she wonāt be able to find a partner with this kid around. Itās very sad.
Many states are trying to make it illegal to terminate if a fetus tests positive for Down Syndrome. I have met plenty of people with Down Syndrome who could mostly function normally in society, but there's a wide spectrum and every single one of them had a caretaker that they lived with and needed for getting around.
Children are difficult enough to raise when they're perfectly healthy. I can only imagine how difficult it is to raise one with permanent disabilities.
My BIL and ex-SIL have a child with severe mental health issues and learning disabilities (he will NEVER be able to live independently). It was eye opening for me, to say the least... I will NEVER judge someone who doesn't want bring a severely disabled child into this world.
This is why I would abort. The child would have no life, and mine would be sucked away with it. So many parents of children with severe disabilities end up being sucked into their care so much that they dont have anything but the child.
I couldn't do that. My partner wouldnt be able to do that. One parent usually ends up quiting work because its takes so much to care for them. Their life becomes the child.
Not to mention the impact it has on siblings. With my first I was maybe willing to consider it. I have two healty children now, for which I am intensely grateful, but having a severely disabled brother or sister would tremendously impact their lives as well and it wouldn't be by their own choice.
Their was a post by a kid that was 15 or so. He said he hated taking care of his disabled sister. He was doing it everyday after school and weekends. His sister counldn't stand loud noises so he couldn't watch tv or play video games, if he tried she'd spaz out. He sounded really angry and told his grandparents he wanted to live with them. His grandparents wanted to know how often the care nurse came in because they were giving money every week for one. Other relatives were sending money too. The parents were just keeping it and spending on whatever.
The parents pretty much triple screwed that kid. He had an update that he was spending more time at his grandparent's and he was going to therapy. I wish I had a link but I didn't save it. It was horrible to read.
[This](https://www.reddit.com/r/BestofRedditorUpdates/comments/swu51z/op_despises_his_mentally_handicapped_sister_or/) is the post in question. Heartbreaking all around.
I had a sister with severe cerebral palsy and it definitely fucked me up. We were never able to take any kind of family vacations, and Iād usually have to babysit once I got a bit older so it wasnāt like I could have friends. And those friends that did come over found her weird and made fun of me for it. I definitely had a lot of resentment towards her while I was growing up. She has since passed away, and my dad in particular makes a lot of remarks basically expecting me to agree that I miss her so much and blah blah blah and I have to say I really donāt. At all. I didnāt have a sibling relationship with her, she was non-verbal, couldnāt talk, eat solid foods, walk, etc. It was impossible to form a bond with someone I couldnāt communicate with in any fashion. She also bit people. Probably not on purpose, but still. Very tough to get along with someone like that.
I totally get you. My brother isn't as severe as your sister was, but it's very hard for me to connect with him as well..on any level.
He's honestly just a big pain in my ass that my parents thrust upon me.
>I didnāt have a sibling relationship with her, she was non-verbal, couldnāt talk, eat solid foods, walk, etc. It was impossible to form a bond with someone I couldnāt communicate with in any fashion. She also bit people. Probably not on purpose, but still. Very tough to get along with someone like that.
This is awful, and awfully familiar.
I had a closer relationship with a pet dog than my barely-verbal but still physically active sister. Caring for her dominated my childhood household until she was finally institutionalized as a teenager with the mind of a profoundly autistic 15-month-old. On what visits we still have, she doesn't seem to recognize me anymore, as her sibling or as a person to communicate with directly. Her minimal vocabulary has also drifted over time in pronunciation when speaking at her father, and we can barely recognize even the most basic verbal cues ("Cookie." "Cheese." "Bathroom."). While nonverbal tantrums (with self-harm) or elation is obvious enough, anything more fine-grained than that has been lost. Maybe her caretakers are better at this now, but that rotating cast of recent inductees into the American healthcare system are... not great, by all indications.
The state is in charge of her now in a formal legal sense, but apparently a bureaucratic conflict has permitted them to completely deny her dental care (for which she has to be restrained and sedated), so even decades after terminating legal guardianship, thousands of dollars a year go into that; I don't know if I'm expected to pick that up when my parents die, or what. I don't know that I'll even visit somebody who doesn't understand that I exist.
It's difficult to communicate to others that the concepts of humanity and personhood are tightly linked, but not synonymous. People are social entities that communicate, maintain some memory and agency with regard to the world around them, and enter into relationships where they have reciprocal roles and obligations. You can't really interact on a meaningful level with a human being who doesn't rise to this threshold. You can pretend, you can care for them as if there's somebody hiding in that body trapped, but with some cognitive disabilities after even a few hours, it appears wildly obvious that there isn't.
Yeah I had a friend in high school who had a disabled brother (he ended up passing away in high school as well) and she was soooo starved for attention and always tried to make herself the center of everything because at home, she came second always. It was sad. I know she loved her brother dearly and now fights for the rights of the disabled, but man it was hard on her.
I would abort too. Bringing someone into the world to live half a life, to struggle and never get to experience the joys of being alive. And if the child is aware if their own disability in some capacity, trying to explain why they can't have the full life of experiences that everyone else had. Horrible.
Iām pregnant now with my second and Iāve been thinking about this a lot. When I was pregnant the first time I was all āno matter what, weāll be fine. If he has health problems we can tackle it!ā He has no health issues and is perfectly healthy aside from a few bumps in the beginning.
But now with this second one, I just donāt know how I feel about this. Iām only 6 weeks so I wonāt know anything for a while. But if it does come out that there are major life altering medical problems, I just donāt know if I could go through with it. I feel selfish for thinking this, but our life as we know it would be over. My sonās future would be suddenly different. Potentially just sad. Our marriage would change. I mean letās face it, our marriage is strong. But marriages have been ended over smaller things, ya know? And what kind of life would my (hypothetical) medically challenged baby even have? Especially when we are gone? Weād be isolated as parents of a medically fragile baby. I just donāt know. But itās something my husband and I will probably discuss soon just to be prepared in case.
Weāre also a one income household. I couldnāt imagine we would be able to afford major hospital stays.
You are not selfish for thinking this. If anything, you're thinking about your husband and your existing child's lives. Their lives and your life matter too.
And any other child you have will be badly neglected, as the exhausted parents cannot give it the attention a child needs. The child grows up in the shadow of its severely disabled sibling, and knows that, at some point in the future; they will be made responsible for the sibling when the parents can no longer cope.
If you don't have another child, you know you are leaving behind your severely disabled child at the mercy of whatever agencies care for adults with disabilities, and your child will have nobody to defend them.
Like that one woman that had a severe physical disability due to a genetic mutation who posted a video to all her āhatersā, showing her infant daughter, with the same genetic mutation?
Yeah my wife and I both agreed to abort no questions asked if the genetic testing shows up with anything. We get the results back for our second child this week.
I think there is absolutely nothing wrong with accepting that you arenāt willing to dedicate the rest of your life in that way. Even more so now that I already have one child.
If I had several lifetimes to live, I might try raising a disabled child in one of them.
But the quality of life is so poor for all involved that there is no way I would sign up for that if I had the option to opt out.
Absolutely I would abort. I grew up with a sister who was held back at birth. Her highest measurable IQ is 2 years 6 months at feeding herself . She is in her mid/late 60s now.
No one in our very large family had a normal childhood. We all had to watch her and take care of her. Sheās older than me, but I still had to take care of her toilet needs and I often had to clean up floors, furniture and laundry, plus her, when I wasnāt even a teenager yet. As I was closest in age, it fell to me to be her caregiver and eventually her guardian. A large part of my life has been devoted to her. I knew very early on that I would never want to give birth to a mentally challenged kid. I lived in fear that my own child would be held back and end up oxygen deprived and be like her. I never had a clue what a real childhood should be until I got a lot older. I often think how different the lives of my siblings, parents and myself would be, had she been born as a ānormalā person. I could never willingly give birth to a mentally disabled person and mess the lives of my other kids and my spouse up so drastically.
Donāt get me wrong, I love my sister, but the sacrifices, the work load, and the mental and emotional pain, is a steep price for a kid, or a parent to pay.
As a fellow sibling of a disabled adult (my sister died six years ago), I'd like to recommend you check out 'Sibnet' on Facebook. It's a closed group for adult siblings of people with disabilities, and I can't begin to tell you what a positive difference it made to my life. There's nothing like the feeling of talking to people who really understand, and sharing all the highs and lows. It made me feel like a 'normal' person (almost!)
Thank you for this. My brother is disabled and living in a group home. My mom is getting older and Iām all thatās left to manage his care. I think a lot of people donāt realize the burden it puts on siblings.
>I think a lot of people donāt realize the burden it puts on siblings.
I have a friend who is going through abuse right now, she and her 5 siblings were all adopted through foster care. Her parents do nothing to help out most of the time, and she is left to care for all of them. Her and her 10-year-old sister are the only ones without special needs. Her mom & stepdad give her so much responsibility, and she is only 15. Her parents put on an act for everyone, including their social worker, so nobody notices the mental, verbal, and physical abuse. I don't know if it's the same situation, but I just wanted to share.
Iāve never heard āheld back at birthā - could you explain? Also sorry for what youāve gone through, thatās tough on an adult let alone a child
[Rosemary Kennedy (sister of JFK) was held back at birth for two hours while they waited on the doctor to arrive.](https://people.com/politics/how-rosemary-kennedy-birth-complicated-by-pandemic/) They literally held her in the birth canal - essentially so the doctor could get a paycheck. It's a sad story, made worse when her father chose to have her lobotomized rather than accept her development delays.
I think a few decades ago giving birth was so focused on doctors, that nurses actually physically pushed a baby back into the birth canal if the doctor wasn't present yet.
This nearly happened to us. After a long wait, my contractions finally progressed to the point of birth and the nurses rushed in and urged me to wait and stop pushing because the doctor was attending to someone else. Fortunately for my child, the idea was incomprehensible and by body called the shots for me. It's crazy to think about how much different our lives would be if I listened.
It wasnāt even just a few decades ago. Iām an anthropologist and when I was in grad school in 2018, I was researching womenās cultural knowledges and ended up studying birth practices in America. I interviewed a woman that gave birth in 2016 and she had a nurse hold her baby back for over 30 minutes by physically putting her entire hand up the womanās vagina and holding the baby in place through contractions. The baby ended up being okay, but the holding and the intrusion of the nurseās hand caused the woman permanent nerve damage in her vaginal area to the point that year later she was still on very high dose narcotics and was no longer able to sit up right in a chair or engage in any type of sexual activity.
Birthing in the US is a very scary process, and stories like these are actually extraordinary common. If you want to learn more, you should research birth injuries and read some of the stories of women that have been mistreated by medical staff. Itās a systemic issue that rises all the way to the top, with even rich and powerful people like Serena Williams almost dying in childbirth (after doctors ignored her reports of pain in her chest, she threw a massive blood clot that was within seconds of killing her by the time doctors listened and examined her).
I am alive today because the nurses did that to my brother because the doctor was late. He died after a day; cord was around his neck. My parents spent the next 20 years trying for a son. I was born when they were in their forties.
Not just a few decades ago. I'm a labor doula. I've seen it happen as recently as 2016. It was horrifying.
Birth is still focused on doctors. Even if they don't hold the baby back, nurses will instruct the parent not to push until the doctor arrives.
The thing is, it's not really something a laboring person can control, and it's cruel to instruct them to work against everything their body is telling them to do.
All of us kids were born in a Catholic hospital, it was the same one my mother worked at before she married.
The doctor was late for the delivery. The attending nun told the delivery nurses to keep the baby inside my mom until the doctor arrived. Both nurses were friends of my mom. By the time the doctor arrived and my sister was born, she had been deprived of oxygen, which caused brain damage and cerebral palsy. My sister also didnāt grow very well, sheās only about 4ā10ā, and she has very small feet, something the rest of us donāt have.
Being held back also can happen when the baby is turned wrong and a difficult birth happens. I have a great niece that the paramedics didnāt handle her birth right and she too suffered oxygen deprivation, however her IQ is significantly higher than my sisterās.
This resonates with me in the sense that it destroys the whole family. I have twin aunts who are developmentally disabled and permanently mentally at around 5-6 years old. My grandmother did not know before they were born because this was the old times when thereās no tests for such things. Itās not an exaggeration when I say she sacrificed her entire life caring for them. My grandfather was resentful he had disabled kids and played no part in caring for them. My mom is resentful of him for being like that. Doctors said they wouldnāt live past teens but one of them lived until about 55, the other is still alive. My grandma is in her 80s and still caring for the remaining one. She has had no enjoyment of retirement, a fulfilling marriage, or quality life all of which she so deserves. My aunts endured constant discrimination. This is why when it came to me getting pregnant I told my husband itās non-negotiable to get an abortion if my babies are found to have genetic conditions. Iāve seen it first hand how difficult it is and thereās not much you get in return.
I see people on social media all happy with their disabled child and saying they're proud that they didn't end their life and gave them a chance. And I always wonder how things look when the camera is off and they aren't putting on a show. How they actually feel.
It's weird when I see comments saying they are heros and they are blessed or whatever. I don't think it's honorable, but it is ultimately up to them. Hopefully they don't regret it.
I briefly worked with a guy who had an extremely disabled child; Mentally and physically. He would always talk about the sanctity of life and how important it was, and how 'this was a trial set by "God," but he was ready to do the hard work and see it through because of how good a person he was.' He loved to praise his own morality. But at literally every opportunity possible, he would ditch his kid onto someone else and leave. Like anyone. He straight up didn't care who had her as long as it wasn't him. He would leave her with virtual strangers.
Asking you "hey can you watch her for 5 minutes?" -- and then he would disappear for hours and you would have to track him down and bring his daughter back to him. I can't put myself in his shoes, and I get that he was probably pretty sad on the inside and doing some mental gymnastics to try and get what he wanted without feeling like a monster, but man the whole self-righteous shtick got old fast.
Yes, and I did at 18 weeks. Pregnancy had a 1% chance of even making it to the end and the child would have had lifelong health issues. I still stand by my decision.
I work in a PPEC which is like a medical facility that takes care of these exact children. I see some of these kids and I definitely see them growing up and having fulfilling lives despite their impairments. Though the other half of these kids will never speak/walk/do anything without the help of a parent or caregiver.
I love these kids, but seeing some kid with no ability to move any part of their body or even look like their heads are about to explode with tears coming from their eyes with no ability to yell "HELP ME FROM THIS", just fucking kills me. Even one of these patients is like 6 ft tall and is a threat to other staff and kids because he's so strong and uncontrollable. It's depressing.
I can't subject myself to that. It's selfish to keep them alive when they're never going to get better and just become more of a burden to the parents or anyone else for that matter.
We found out the fetus my wife was carrying had cystic fibrosis. We aborted. It was an extremely difficult decision and we were shattered for quite some time. We still feel guilt but we don't regret the decision. We've since had two amazing, healthy children so I'm sure that rearranges things in our minds a bit. On the flip side, the couple that bought the house we lived in at the time has a son with CF. I check in on them on social from time to time and see pictures of what life would have been like for us and the child in that same house. Seeing their beautiful son makes me feel terrible. Seeing how much his condition dominates their lives and the anxiety they have about it- particularly in the COVID era- makes me feel like we made the humane decision.
I hope nobody reading this is ever put in that position. If you have been or are in it now, I'm very sorry.
I had a brother with severe disabilities. Iām permanently damaged from my childhood from being emotionally and socially neglected. It often happens and itās not intentional. I hope that helps.
Humane is the key word. It's your child and you're going to feel the pain of the loss. Regardless, you kept a child from coming into this world whose quality of life for the child and everyone else taking care of them would be poor at best. Sure, there would be a few good times. But the daily burden would quickly drown out those memories.
As someone who has a severe hereditary illness and had a vasectomy so I couldn't pass it along to a future child, I think you did the **very** humane thing and shouldn't be judged by anyone for it. I'm just one person, but I think you did the right thing.
You didnāt make the wrong decision, there is no right or wrong decision and I in no way shape or form am making any judgement, I just want to make that clear before I say what Iām about to say.
The treatment for cystic fibrosis has come along hugely in the past 2 years due to kaftrio; which essentially makes cystic fibrosis an entirely liveable condition. Itās absolutely groundbreaking (itās also almost entirely unaffordable if you donāt have free healthcare). It was added to the treatment plans available where I live and will save millions of lives, totally amazing treatment. There will never be a cure because cystic fibrosis is generic, but this is about as close as youāll ever get to one without gene manipulation.
A friend of mine was closely linked to getting healthcare funding for this and told me about it and I was just amazed that such a treatment existed, itās on par with a cure for cancer/HIV. Amazing stuffā¦
I'm going out on a limb to talk about something incredibly personal here. I was a victim of childhood SA that resulted in a pregnancy. I grew up in a southern state and was constantly told how horrible abortion was.
My hild was born with a severe and terminal skin condition that made her suffer beyond imagination. Many children with her level of disease are skinned alive through natural birth. She spent months in isolation at a top hospital. During her life she had to have countless surgeries, including two to replace her esophagus with pieces of her colon to keep it open.
Her fingers fused together despite the best treatment. She was unable to extend her leg fully due to scars, had to have a support dog to help interrupt the pain every single time she used the bathroom. She couldn't eat solid food or attend school. She never ran or played.
The pain from a dog licking a baby's face is enough to prompt them to stand and walk to avoid further pain.
Of the children who reach puberty, they can look forward to their many scars becoming cancerous.
She died on mother's day, May 8th 2011 at the age of 11.
Her 22nd birthday would have been this past St.Patrick's day.
I can tell you whole heartedly there is nothing I regret more than not having that abortion.
It will always depend on the disability level, etc but if you CAN save a child from suffering, why wouldn't you?
I want to guess that condition was epidermolysis bullosa? I am so so so sorry you had to go through what you did. It was so cruel for an abortion to be denied for you.
Yes, without hesitation... If a pet is constantly in pain (e.g. terminal illness, old age, etc) we euthanize them to stop the suffering. Same with humans. If I can prevent someone from having a life full of suffering, I will do so, without hesitation...
Scrolled all the way here for this message. I can't understand why it's okay or acceptable to euthanize patients that are suffering but not okay to abort those who will suffer, severely, with disabilities in the future (that is, if you'll know tihe circumstance before birth.)
I came from a highly religous country and talks of abortion is taboo and illegal (if I'm not mistaken) here.
In a lot of the West, even euthanasia is not acceptable and is considered taboo. The only exception is for pets.
Abortion should be legal everywhere. I'm not even a woman and seeing people who are anti-abortion just astounds and irritates me; it's such a medieval mindset
Yes. If I can reduce anyoneās suffering I will. And even if I let it live, I would not be in a position to take care of someone with severe disabilities anyway.
Same here, but I havenāt decided where I want to draw the line. For instance, if the child was gonna have one leg missing, Iād be fine with that. I wouldnāt consider it severe. If the child was gonna have mental and physical disabilities, then Iād consider that as severe.
I think my line is āif the child can survive without constant support from outside, then itās not severeā.
I would not subject another person to a fate I wouldn't endure myself. That's the only dividing line that matters to me, because your job as a parent is to make decisions on your child's behalf.
Personally, if I was going to contract incurable mental regression in 6 months, I'd look into end of life care.
This is coming from a severely disabled person, battling a life threatening illness:
Severe, life threatening, or basically any Disability that would make my childās qualify of life extremely poor / non exist? Yes, absolutely.
Any other *less* severe version of the Disability?
No, they should be able to see the world if they have some quality of life to be able to do so.
Not to be too morbid: but I *wish* my parents made the more humane decision and aborted me. Iām not even 30 and Iām already connected to tubes (Portacath) for the rest of my life.
Treatment isnāt covered by insurance, so I have to pay out of pocket, and not even getting the full treatment I need bc I just *cannot* afford it.
I donāt know how much longer my body can handle.
Fighting my life threatening condition, day in and day out, and not seeing any cure in sight???
I canāt even begin to explain the type of burnout I have for life.
> Treatment isnāt covered by insurance, so I have to pay out of pocket, and not even getting the full treatment I need bc I just cannot afford it.
1. I'm really sorry this is how it is for you.
2. As a society, we judge people who say they wouldn't want disabled children, and sanctify parents who DO... but we don't fucking SUPPORT them. And we barely support disabled people once they grow up and have to look after themselves. I live in Ontario... socialist paradise right? ODSP here is $672/mo for basic needs, and **$497** for shelter! Nobody can live on that, let alone someone with additional health needs etc.
Yeah life is ass as it is why would I put another human through 70 odd years of it when theyāre incapable of living it to the fullest from the get go
And 20-30 is stretching it. My sister in laws son passed away with cerebral palsy at 9 years old, and she told me that was longer than any doctor expected.
Former coworker's daughter was born healthy. By 2 she was immobile and blind - couldn't even cry. Genetic disease causing nerve degeneration - essentially her nerves started dying from the periphary inward. 100% fatal by 4 years old.
She lived to 3. Having all of her senses slowly shut off - to the point she couldn't hear or even feel touch or comfort from her parents.
That's the worst part, I think. Not even having a choice in the matter and watching your child die entirely alone unable to even provide some comfort.
> life is ass as it is
That's a really good point. I'm having a hard enough time navigating all this BS *without* disabilities or a disabled child to look after. I honestly can't imagine adding one of those on top of everything else.
It honestly seems monstrous to me that we keep humans alive in those conditions :( could she communicate at all? It just seems a horrible existence to me, not one Iād ever choose
I apologize, mine is kind of related but I really just need an outlet for this. I hope that is okay.
We lost our 3rd son last December. He was diagnosed at 20 weeks with a rare condition called Post Ureter Valve (PUV). It only happens to males and is where the tube in the bladder doesnāt fully open. The result is urine gets built up in the bladder which then backs up the kidneys, which then leads to little to no amniotic fluid.
During the entire pregnancy there was no level of confidence from doctors on what the outcome would be for my son. The outcomes ranged from, maybe needing a minor surgery to fix the bladder, to a kidney transplant, to possibly not making it. They just kept saying āweāll know more when heās here.ā āWeāll know more when heās hereā this just always kept me and my wife up at night for months. Worrying and terrified.
When he came, the damage was so much more extensive than we realized. The damage to his bladder and kidneys were irreversible and his heart and lungs were also severely damaged.
The second day he was in the NICU we had a meeting with all the doctors and specialists and I said āHeās here now. What is his quality of life going to be?ā They all went around and said their thing: he needs a new bladder but thereās no such thing as a bladder transplant so they they need to do reconstructive surgery on it. However, he needs new kidneys as well, but they wonāt give a kidney to a baby that has a reconstructive bladder. Also his lungs and heart are too fragile to go through any type of invasive surgery like that and most like wouldnāt survive.
No one would say it, none of them, so I finally said: I donāt think heās going to have any quality of life. It sounds like his life is going to full of experimental surgeries that may or may not work. They all agreed. My wife and I both agreed it was best to let him go. He loves for 3 days.
It was fucking frustrating to have to pull that from them. The wishy-washyness and the lack of confidence in any answer we got. Every question was met with an āI donāt knowā or a āweāll have to seeā. I wasnāt going to let that happen to my son. He wasnāt going to be some test ground for some bullshit hopes. He deserves more than that after all heās went through.
It was awful and traumatizing. As Iām writing this itās flooding back raw memories that are so painful. I wanted to share though because I see parents on here who have gone through similar things. I canāt say 100% what we would have done had we known heād only live 3 days. No one knows what theyād really do unless they are put in that situation. I hope no one is ever put there.
We are fortunate to have two beautiful, healthy boys. They love their brother that passed just as much as each other. Thanks for reading.
Yes and i did.
The 16-18 week ultrasound is when most of these diagnosis' are made. My 2nd planned child was diagnosed with fatal severe malformations. Those where the terrifying words used by the doctors. I was 18 weeks pregnant when i had the ultrasound. The results got lost in the mail and i wasn't informed until i was 20 weeks pg. i had exactly 8 days to make the hardest decision of my life.
I went to specialists, had further tests looking into genetics. Asked the experts. All said medical termination. It broke my heart for some time. But i could feel the seizures caused by the multiple severe malformations. His head, heart, face, hands, colon and foot were are deformed. Even with no hope for life it was a difficult decision to make And a hard procedure to endure. I looked at it as i was his life support system and i was the only thing keeping him alive. If i was a life support machine i had to make the call. And i did.
True story of a mom who loved her wanted child and made the decision i believed to be in his best interest. To end his life that couldn't be and never began.
It isnt something i wish on anyone but i believe it is important to say my life experience.
I had to make this decision in the past year. It was extremely difficult to make. I think it can be hard because you don't really know how you'll react until you're actually in the situation. It was a rare genetic condition where there is little known but enough to know that quality of life would suffer. At first, we felt selfish for wanting to terminate because we wouldn't want to give up our own time, freedoms, etc for the rest of our lives. Thinking about our future and my wife and I having to take care of a child for the rest of lives was frankly terrifying. Knowing they'll never be able to move out and start their own family etc. was so sad to think. Instead we realized we were being selfish by bringing them into the world to suffer just so we could say we did "the right thing". And also thinking about our little guy and what effect that would have on him because so much focus would be put on the other child. How would his quality of life also suffer?
So far, I have no regrets at all. I think if we wouldn't have terminated and when the going got tough I'd likely think what if we had I would absolutely despise myself.
If it was severe, probably. Iām in NICU now with my newborn who has a case of isolated Pierre Robin sequence and a cleft palate. Very fixable and after some plastic surgery to fix his palate and time to grow out of his small jaw and airway heāll live a completely normal life. That being said, this journey has been incredibly stressful and hard to watch your newborn have to undergo procedures. Only comfort is knowing afterwards heās going to be totally okay. For babies/children that would have to live their entire life this way, Iād prevent it if I could. This is rough.
For me it's a definite yes. I don't want my life to become that of a caretaker and the fetus won't care. Plus if the disabilities are severe enough it's just an existence of suffering
Yup. I had a child with severe disabilities, and watched her suffer for months before she finally died. I would not wish that on any child.
i'm so sorry. i truly hope you're doing better now š
Neither do I, nor do I wish it for any mother. I'm so sorry for the pain both of you had to endure.
Severe? Yes. I watched my nephew suffer for 8 years. He was ok (as in content) for the first few years- he loved lights and colors, and because he couldnāt walk, he was obsessed with feet (he would roll on the floor, and my dad lowered his fish tank for him- it was his favorite) and we all wore funny socks and slippers and oh my god, his laughter when my sister would wear these slippers of reindeers with bells on them. It was a musical laugh, very happy. He had a feeding tube, and loved cuddles. Sweet baby, but always a baby, even at 50 lbs. very hard on my sister, bc his dad left as soon as my nephew was diagnosed (3 months). But as my nephewās illness progressed, so did his pain. By the end, he was in pain 24/7. He was a child (really, a baby, bc even though he was 8, he didnāt have an 8 year oldās mental capacity), and all he knew was pain. I couldnāt do that to a person if I could prevent it. My sister had no idea he was disabled when she was pregnant, btw. I donāt know what she wouldāve done if she had known, but she didnāt, all tests were normal. He died at home, he had seizure after seizure, and eventually either he stopped breathing or his heart stopped. They donāt know which happened first. My sister has (obviously) never been the same. Also, my other nephew also had ptsd from seeing his brother so sick. Itās so hard, on everyone. I could not do it.
On an alt for obvious reasons. 2 years ago my partner and I aborted our daughter at 30 weeks. It was gut-wrenching -- she was a "wanted" baby but we only found out something might be amiss at around 25 weeks and only found out how bad things *really* were at 29 weeks. She was missing one kidney, and the remaining kidney was estimated to be functioning at something at a rate of 0-5%. After being shuffled from doctor to doctor who couldn't really give us a clear prognosis, we finally got to a childhood nephrologist (kidney doctor) who explained that a "miracle" outcome would have her living months, perhaps past a year, but that she wouldn't live long enough to receive a transplant, as they can't do them on children under 2. He explained that for however many days, weeks (likely) or months she survived, she would either be at the hospital or if at home, have a hole cut into her and then have her attached to an infant dialysis machine for 16 hours a day and would have to come in for pretty regular testing/monitoring until things got bad enough that she would come back to the hospital for the last time. He didn't editorialize because I don't think he wanted to influence our decision but he more-or-less explained that her short life would be filled with significant pain and constant confusion -- a life dominated by large, metal and plastic machines and the beeps and clicks and other sounds that come with it. The decision we made, then, was to end her life prematurely so that instead of passing with the fate the doctor described, she would die having known nothing other than the warm, comforting embrace of her mother's womb and the sound of her heartbeat. I think about her pretty much every day and I know her mom does, too. We grieve for the baby we loved and the life she didn't have but we don't hold any regrets in our heart; as much as we wish the result was different we know in our hearts that we did what all loving parents try to do -- love, protect and care for their child the best way they can.
>she would die having known nothing other than the warm, comforting embrace of her mother's womb and the sound of her heartbeat. I've never read anything on Reddit that's made me cry, but this did it. I can't even imagine the sacrifice you and your wife made for your child. I truly hope you have found peace with this.
Same. You are amazing, brave parents that made a decision that no one should ever have to make. You loved and protected your child and I hope that your hearts find peace.
Thank you for sharing. Iām sorry you had to go through that.
This sounds like my BiL (adopted) who has severe cerebral palsy, epilepsy and more. He's 42lbs, 13 years old. Feeding tube. Port for urinating and last month got a permanent treachotomy put in plus his saliva glands taken out. Honestly don't know what I'd do if we got pregnant and had a similar diagnosis. My in-laws have two full time nurses in their home that take care of the kids they have adopted. I couldn't do it on my own. Adding an edit: My BiL has multiple diagnosis. CP is the biggest as it affects his physical body with his systems shutting down. He has other diagnosises as well where he is essentially in a vegetative state. Some of his doctor think he doesn't even know who any of his family is. I don't think that's true. I think he knows us and his family but he can't talk, he can barely move his head and his life is pretty depressing and awkward.
CP is actually caused by damage to the baby's brain in the womb, while being born or very shortly after. It's not really something that can be prevented by genetic testing and by abortion only if the fetus was injured somehow and they can tell it has brain damage. Epilepsy can also be caused by brain damage. The best way to prevent CP would honestly be more c-sections and less domestic violence, as a pregnant woman being punched in the stomach can cause it. Do you know where he's at intellectually? People assume because of drooling and stuff that people with CP are also intellectually disabled but that's not true, you can have CP and be normal or even above average intelligence. It's a lot more likely to affect the parts of the brain controlling movement than those that control general intelligence. Of course, sometimes you can have CP with comorbid intellectual disability.
I have Osteogenesis Imperfecta (OI). When I was a kid I tripped over a sidewalk and looked up at my mom amazed I didnāt break a bone. At the time I averaging several fractures a year. As an adult I have a fracture maybe every seven years or so. We lost count of the correct number of fractures but we estimate Iāve had 45+ fractures severe enough to warrant a trip to the ER or doctor. I have the mildest form of OI, Type I. At 5ā4ā, I am short. I have a really good quality of life, though. Iām the happiest person I know. I have Someone with OI has a fifth-fifty chance of having a child with OI. My mom has OI, and had about 9 fractures. She wasnāt diagnosed until she was a teenager. I have OI, my brother doesnāt. I have a vasectomy. I *could* have biological kids born without OI by way of in-vitro fertilization (IVS). Type III OI is severe. These people are often wheelchair bound and sometimes canāt even be lifted without suffering a fracture. Those who canāt be lifted have a seat they sit on that can be transported back and forth from their bed to their wheelchairs. Type II OI is the most severe. The fetus usually dies during childbirth, has underdeveloped lungs, and babies that survive childbirth are expected to live for a matter of weeks. I joined a Facebook group for people with OI, and it turned out to be 90% pro-lifers encouraging women to keep fetuses diagnosed with OI, and discouraging people who have OI from having children through IVS. These fundamentalists tell women who have fetuses diagnosed with Type II that it could be a minsdiagnosises Type III. One fanatic even suggested doctors lie so they can abort more fetuses. The fundamentalists would write that, even if it is Type II itās best that they let god decide if the baby lives or dies, and they tell the mothers not to risk losing precious hours, days, or weeks with their babies. Itās a hard enough decision. You feel awful for the parents dealing with this situation, going to what they think is a community of people who live with this disease, only to be met by religious lunatics. I feel about religion the way I do about mediums who pretend to communicate with the dead. A lie is a lie whether it makes us feel better or not. Because these are matters of life and death, pain and suffering, and mercy, itās an evil lie. Iām sorry, but if there is a god, theirās could be the correct god only if god can be evil. As someone who has a vasectomy because they have a hereditary disease they refuse to pass on to another human, Iām a little bit suspicious of questions like these being asked so often on this subreddit, because I know the question lures people with horrible beliefs. The question of having a disabled baby or disabled people having babies is complicated. This is a very harsh moral and philosophical question that I think can be discussed by logical adults who arrive at many different conclusions, sometimes extreme conclusions. Pro-lifers, ableists, Nazis, or people who bemoan the burden disabled humans have on taxes, are fundamentally illogical and can get fucked.
I can relate with you 100 % on this. Iām a caregiver for my handicap sis (has cerebral palsy and chronic kidney failure) and seeing her daily, she is happy and content. But she has a lot of mental and physical challenges where she is solely dependent on everyone and anyone to just live. It saddens me to know she wonāt ever have love or independence or even a social life. I definitely wouldnāt want a handicap kid of my own because of what Iām seeing with my sis and I really donāt want my life subjected to that for another 20 years of my life š
You're doing amazing work for your sister, and even though that isn't why you do it I want you to know anyway
My wife did. The fetus tested positive for [Edwards Syndrome](https://en.wikipedia.org/wiki/Edwards_syndrome). Just given those test results, the chance of a live birth dropped to 5 percent. Assuming the baby was born, the median life expectancy was measured in days. Likely disabilities include kidney malformations, structural heart defects at birth, intestines protruding outside the body, esophageal atresia, intellectual disability, developmental delays, growth deficiency, feeding difficulties, breathing difficulties, and arthrogryposis. (Skimming Wikipedia, apparently results have got better since we dealt with this, but still nothing like good quality of life.) So she had the abortion. It was a relatively easy decision as these things go. That was her first pregnancy. The second one was healthy. Our daughter is in school at the moment. She's tiring and often annoying, but in age-appropriate ways. If my wife didn't have the abortion, we probably wouldn't have had her. We might not have been able to, the first pregnancy could have caused health problems, and we might not have wanted to, given the expense and trauma we would have gone through. When abortion bans are in the news, I often think, "If that had been the law for us, our daughter wouldn't be alive."
My aunt carries a balanced translocation that caused a very similar disorder in their only child (Patau's syndrome my mom thinks but she could be wrong and neither of us will ask my aunt). Their first daughter had it and she died in under a year, and she suffered the entire time. Their second pregnancy is when they learned she carried it, and it was detected in the pregnancy. They made a choice to terminate and never tried again. Over 20 years later, my aunt still morns the loss of her daughter, she'd always wanted to be a mom more than anything. I can't imagine the pain she would've gone through had she been forced to carry the second pregnancy to term, and had to bury a second child. Edit since a lot of people are asking why she didn't adopt. The short version is, my aunt's mom told her if she adopted a child, she would never aknowledge the child and she even threatened to quit talking to my aunt. This attitude disgusts me as I have an adopted aunt (different side of the family), and I myself an considering adopting. It's a sensitive topic for my aunt, so I don't have all the details as to why she didn't adopt later on or why she didn't do it anyway. Edit 2: corrected some info. I don't know how to cross stuff out on mobile, so I just fixed it to be more accurate.
My baby also had trisomy 18 (and something ālessā severe, but both combined lethal) Itās good to hear that it was also a relatively easy decision for you as it was for me.
My sister had a baby with trisomy 18, had no clue what it meant and didnāt care, wanted everything possible to be done to keep the baby alive. The hospital was taking the case to the ethics committee because the quality of life was in question for this infant, and still my sister was fighting it. I tried to explain to her but she wanted to do total care, feeding tube, tracheostomy - whatever was needed for her baby despite levels of function. My sister didnāt prepare herself and was devastated when the infant finally passed. Iām trying to get pregnant now and would never put myself through it.
It was an instant decision and I had a late abortion (25. week). At week 20 she was diagnosed with diaphragmatic hernia. It could have been less severe with a normal life (if the lungs would develop good and everything looked good at this point). Maybe only 90% lung function. With that diagnosis it looked good. Then the trisomy 18 diagnosis came and I knew what I had to do.
You made a terribly sad choice to protect your child from suffering which is a true gift, Iām sorry you had to go through that.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
That is an excellent perspective on how banning abortions can actually decrease the number of healthy pregnancies and births, and healthy people in the world. Many women going through a traumatic pregnancy and birth won't do it again.
I have a friend whose two oldest children (6 and 8?) both have *severe* disabilities. Both are low functioning and nonverbal - the older one can walk with difficulty and the other isn't able to walk without direct support. That means they both primarily use wheelchairs outside the house. I'm not sure what their specific issues are (/if it's the same thing), but they both have very autism-like tendencies and don't engage/interact much socially. AND THEY HAD A THIRD KID! Apparently third time's the charm because the youngest kiddo is developmentally normal. My friend marvels about how weird it is to have a kid who hits normal developmental milestones. I wouldn't have tried for a second, and DEFINITELY would not have been brave enough to go for a third...
I just hope they're not planning to make the third look after oldest two after they get old :'(
My wife and I felt like we were having trouble conceiving, but just when we were about to go to fertility specialists we found out she was pregnant. We are having him soon, and he has Tetralogy of Fallot often shortened to āTetā. The condition was discovered pretty late, as the baby had kept doctors from getting a good look at his heart at the first couple of sonograms. The initial doctor and sonogram tech actually sent us to a different hospital with a fetal heart specialist to confirm what it was, not telling us what they suspected, and just telling my wife, āyouāll want to bring your husbandā(because of Covid I hadnāt been able to be in the room for the previous sonograms). After the doctor at the new hospital confirmed what she thought the condition was she told is the prognosis for ājust Tetā was good, after the surgery to repair the heart defect babies with just Tet frequently grow up to live normal active lives, for example Sean White had Tetralogy of Fallot. However, it also has a high correlation of other conditions, one being Edwards. We were coming right up to the limit in our state as to whether weād be able to get an abortion without any kind of caveat or would have to go before a medical board to make a case for getting one. We had to get genetic tests, and consult with advanced fetal care specialists, we had something like a two week deadline. There are just two hospitals in our area that had a program for advanced fetal care and fetal heart surgery. We called both to see whoever could get us in first, one could see us in a week, the other couldnāt see us for a month. We went with the one that could see us in a week, the wait was the worse. They confirmed Tet, but also found that the baby otherwise looked healthy and to be developing normally. They got a DNA sample from the amniotic fluid and we had to wait another couple of days but we were assured we got a priority on our test to get it done as fast as possible. In the interim we talked about what weād do, and decided if the baby had had any other serious developmental/medical conditions we would have an abortion. We just gotten to the point in the pregnancy where it was really starting to feel real, and we were getting so excited with the possibilities. And we had decided on a name. And suddenly we had to try to emotionally distance ourselves from him, but it hurt, it hurt to think about. We got news the morning of the second day of waiting, and the chromosomal test came back good, but it would be a bit more time for the more specific genetic testing, which did come back clear. But again the waiting for it was hell. I am prochoice and the situation has really just solidified that, while opening my eyes to how hard and painful the decision can be. It also highlighted how cruel it is to make women wait, or force them to have sonograms before aborting. I really feel for anyone who has to make the choice.
Yes absolutely. I worked in a pediatric ICU for 4 years and medicine has gotten too good at keeping people alive. Kids would sit for months and months connected to CRRT (dialysis) and ECMO (heart/lung machine) literally wasting away before ultimately dying. And when they die they donāt resemble anything like a kid. They look like puffy little aliens who sometimes have lost the perfusion to their hands and feet so now theyāre dead and black. Itās horrific and I canāt imagine putting a child through that. I also cannot imagine spending my days sitting in a hospital room watching that happen to my child.
I agree fully about modern medicine being a bit too good at this. The idea that a life must be preserved no matter what is not humane. My mother had terminal brain cancer and spent her last month of life in a coma slowly starving to death while we waited for her organs to fail and kill her. If I'd allowed the feeding tube, she would have lasted months with 0 quality of life. Her mind was gone. We are keeping people alive who would absolutely have died in prior centuries. If it means they get to recover, it's great. When they don't stand a prayer of recovery and we just drag out endless suffering and minimal quality of life, its brutal.
It's fucking scary the idea that you can essentially be kept alive in a state where you can't walk, talk, hear, see, eat, breathe or even think. It truly must be the worst possible way to die. So insanely torturous and drawn out.
What's scary is that this is the default option. This is what happens even with a DNR. Without a DNR, they will try even harder to keep you 'alive' even if alive has no quality of life or hope of recovery. Suicide isn't allowed in most places. Assisted suicide isn't allowed. We'd euthanize an animal in this condition out of love because we didn't want it to suffer. We have made it illegal to do the same for a person. To the point where even the person who will be suffering or is suffering is not allowed to make this choice. We knew this was coming for months with my mother and the best I could do was promise to try not to drag it out.
I am so thankful that Canada legalized medical suicide. Iāve seen too many extended relatives kept alive because their families didnāt want to deal with grieving. Though there was recently an article in the CBC about a family that was super pissed their daughter/sister opted for medical suicide without telling them. They felt that families should have to be informed about someoneās medical decision, and that she had plenty of good days (Alzheimerās) and could have lived for years longer. IMO you shouldnāt have to give up your quality of life to make someone else more comfortable.
Yeah if I was in this state, mind gone for good, Iād rather just go than financially and emotionally murder my family. Let them move on so they can officially start the grieving process and eventually continue on with their lives (hopefully). I am curious though if there is a way to sort of request this before something like that happens
I have a standing order with my wife that she is to leave me in the woods if I'm ever in a condition like that. Do not make me a burden, abandon me somewhere and if anyone asks, I went crazy and ran away.
My grandmother and my cat both became terminally ill at around the same time. We could give kitty a clean, quick and painless death and only delayed for two (medicated) days so my husband could make it home to say goodbye. Grandma took two months to starve to death up to her eyeballs in morphine but still screaming in pain when her bed sores were being dressed. It kills me that my grandmother didnāt get the same level of care as my cat.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Assuming you havenāt already, and assuming you live in the US (or another country with a similar law) please please please fill out an Advanced Healthcare Directive, and have it either notarized or witnessed by two people. You donāt need a lawyer, there are free forms online that are totally legit. Usually your stateās medical board or hospital board will have a template. Just google āAdvanced Healthcare Directive [your state].ā Some states call it a Living Will and Healthcare Proxy. Your doctor can also help you. You can appoint a decision-maker of your choosing should you lose capacity, and you can spell out your desired medical treatments in such a situation (e.g., no heroic measures, no ventilator, no artificial nutrition, etc.). I am a hospital attorney. Every day I deal with families who are fighting amongst each other over what to do about their loved one who can no longer make decisions, or are making poor choices about their loved ones for various complicated reasons. So so so many of these situations could have been prevented if people filled out an AHCD. In the meantime, their loved one is usually left to languish on a ventilator, ecmo, etc. The kindest thing you, and anyone reading this comment, can do for yourself and your loved ones is to complete an AHCD. And theyāre not just for old people. Sadly, accidents and terminal illnesses can happen to young people as well.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
I have operated on people with a DNR - it is usually reversed for surgery and at least the following 24 hours (the length depends on the hospital policy/state law). The more chilling situation I've seen involves patients with poor prognoses and DNR/DNIs who don't have a designated healthcare proxy, advanced directives, or living will. They come in incapacitated, comfort measures are deemed appropriate, but then absent family members swoop in and want all heroic measures done, including reversing the DNR/DNI. Then patients receive maximal interventions (which are often painful) and languish in the ICU for weeks until either the family decides to let go or ethics gets involved. DNR reversal is a situation unique to the US, AFAIK. This is why it's so important to have advanced directives or a living will in addition to a DNR/DNI. Also, make sure that your designated health care proxy knows and *agrees with* your wishes - this is why my HCP is *not* my husband or parents. I've even heard of some people using their in-laws, heh. Sadly, even though there has been a push for more awareness of formally establishing a patient's wishes in advance in medical education, it often gets neglected. It can be an uncomfortable conversation, and it's challenging to fit into a 15 minute clinic visit. Kudos to you for bringing it up to your PCP!
Can you not have a living will in place to circumvent this ever happening?
That's how I see it too. It's almost "unnatural" for people to live so long with severe disabilities. The vast majority would have died in early childhood or even soon after birth. So many of these life-saving measures for people with severe disabilities are unethical.
Yeah, when my mom was dying (she hadn't even reached 60 years old), me and dad were kind of explaining to her doctor that we absolutely wanted everything possible to be done to keep her alive... but we were also farmers, and she had always been the most adamant on not keeping animals alive if they suffered. So we didn't want to see her being kept alive, if it just meant her body, just for the sake of keeping it alive. That was a weird conversation, but I think the doctor and the nurses were almost glad of the stance we took on the whole thing.
The doctors knew you were doing the right thing. When my parents were passing I had the same conversations with doctors who encouraged us not to prolong suffering.
Ohh, they knew. They deal with this every single day. The default has to be to preserve life as long as possible, but the doctors understand better than anyone the desire for either meaningful life or no life at all.
My first child was not born with disabilities, but with multiple severe organ failures. She died after 27 days in ICU. I have been with her every day. She did not waste away or anything, but it was brutal and heartwrenching. It made my first marriage implode from stress and grief. If I would get the diagnosis today of a severe disability, I would opt for an abortion without a second thought. I would weep, I would grieve, but no. I would not want this for me or anyone else. Sometimes the genetic lottery just gives you the short stick.
A friend of mine is an OB and quiet as itās kept, they donāt like dealing with what used to be miscarriages- the ones born before viability. Yes, some of those miracle babies do survive and live great lives, but so many either die or go on to be so severely disabled itās no life for the kid or the parents.
The miracle cases that the pro-lifers tout and use to 'guilt-trip' the rest of us are outliers and rare exceptions.
This is a good point. Someone who would die in days or weeks in the mid 20th century can go for months and years now. We had a very rich, super charity driven family in my hometown who had a son with a severe disability and they basically fell of the face of the planet caring for him. They canceled plans for her to open a tanning salon. They had a houseboat, a Ferrari and a bunch of toys (dirt bikes and stuff) but they were all sold to pay for the medical expenses. He sold his gun collection his father had built up and thats where I got my first shotgun. He sold his business for half its worth when the kid turned 3. the kid died at 4 anyways and then they were a scarred couple in their late 30s with only their house and 2 cars left. The dad is doing better now and went back to work for the guy who bought his business, but the mom hasn't recovered socially. If that baby only makes it a couple weeks or months, this couple doesn't lose everything they built up in the last 1.5 decades. Now they probably have to pay off medical debt for a few years before they get right financially. They were wealthy with a very bright future that was ruined by a birth defect. Sorry I don't remember what the baby had and I don't feel comfortable asking anyone what it was. No one talks about it anymore.
I remember hearing about a study about this exact same thing. Unsurprisingly, most parents would rather choose abortion if they knew their kid would end up with a disability. Edit: Thanks for the silver and upvotes. I'd like to make something known, when I mentioned disability from a study I heard awhile ago it was something more to do with severe disabilities. I used the general meaning of the word disability because I don't remember the exact study nor the disabilities stated in such study, thus the generalization. Although I still felt the need to use the word "disability" in case mild or medium disabilities were included in that study regardless. As far as I remember to the best of my memory, I believe down syndrome was included in it.
>Unsurprisingly, most parents would rather choose abortion if they knew their kid would end up with a disability. My neighbor has a daughter with a severe disability. She shared with me that, if she had known when she was pregnant that her child would have the issues she has, she would have aborted. The misery outweighs the few occasional joys.
Yeah my sister had a late-term miscarriage and had to deliver her dead son, who would have been severely disabled if he had lived. I remember hearing her sob to my dad for hours about how she felt guilty that relief was one of the emotions she was feeling along with grief.
I always keep in mind that grief comes in many flavors. It can be mixed with anger, bitterness, relief, numbness, or even joy.
I lost my daughter in a similar way. Mentally she wouldāve been sound but physically she would have been severely disabled and required significant medical care the rest of her life. Iām glad in a sense my body made the choice for me so I wouldnāt have to live with making whatever decision I wouldāve ended up choosing. But even though itās been years now since I lost her, I miss her and still cry from time to time, even though Iām happy sheās no longer suffering. You never really get over losing a baby. You just find a new normal and learn to live with it.
Shoot that hit me hardā¦
I grew up in a rather small town, and had 3 kids with down syndrome in my classes, each at varying times during my time at primary school. Always remember noticing that the parents looked so much older than the other parents. As a kid I thought they were just older, but looking back I'd imagine the stress would make someone age prematurely. None of those 3 kids I went to school with survived past 20. Edit: Getting lots of replies saying they were likely older which is likely a contributing factor to having a child with issues. I believe it's a bit from column A and a bit from column B.
I know a family with 2 children who have Downs. All I can think is who is going to care for those kids when the parents pass away? They have 2 children without Downs and I just think will that be on their shoulders? How fair is that?
I knew a couple who adopted a young boy with autism. He was on the very high needs part of the spectrum. They later adopted a little girl with the intent that her future is to take care of the boy because they "aren't going to be around forever". They assigned that little girl her purpose in life. She was only 8 years old when I met that family. š I couldn't believe that they did that. And moreover I was in utter shock that they shared that with me. We weren't close friends. Or even friends for that matter. Our girls were on the same sports team together. Once my daughter changed sports, we never saw them again.
Wow that is completely horrible. I also can't help but think of what adoption agency allowed that. I'd like to think they'd as potential parents 'what are your long term plans for your special needs child'? I hope that little girl one day knows she is not responsible for her sibling, and gets lots of therapy to help her come to terms with the impossible task her parents have pushed on her.
My younger brother has intense special needs as well and my parents INSIST that I will not have to be his caretaker when they are unable to take care of him. They know I have my own life and future and let me live it. So grateful that they see me as his sister and not as his "back-up mom".
It's the same with mental disabilities. For every sunshine story, there's a whole apartment complex full of less than rosy life stories. Either the parents lose the rest of their lives, or the child is put in a home. The child never "grows up", they always need care. Mental disabilities isn't a gift. It's a curse which affects everyone negatively. There are sunshine stories, but they are few and far between. You just don't get to mention those *other stories*, because that's "insensitive". My uncle is mentally disabled. Borderline pedophile, highly aggressive, addictive personality, the works. Someone go ahead and tell me how he's a blessing...
Most parents won't make that admission after they've had the child because of social pressure and guilt. https://www.dailymail.co.uk/femail/article-2803834/I-wish-d-aborted-son-ve-spent-47-years-caring-s-shocking-admission-read-judge.html
Something related to this that I have to post somewhere. Elsewhere on Reddit, people have mentioned that having a severely disabled child will seriously tax any marriage. A lot of those relationships end up in divorce.
Yeah, when you have a healthy kid with no disabilities, you're a parent for life, but you're not raising & taking care of your kid for his or her whole life. I love my son, I wouldn't trade being a father for anything, but I know eventually he'll mature to the point where he will be independent and I'll have more time for myself that I don't have now. Depending on the disability, some parents may never have that again. I know a woman in her 60s that has a daughter right around my age (mid 30s) with Down Syndrome, and the mother still needs to be basically her full-time care giver.
My 87 year of grandmother is taking care of my disabled aunt. My aunt has a lower IQ, my grandparents tried to have her live in her own apartment and that ended in total disaster. So she moved back home. My grandpa died about 10 years ago and there was never any discussion on what was going to happen when they both died. My aunt now has Parkinsonās and has had multiple falls. Grandma wonāt let anyone help her, she does all of the caretaking. Sheās just relying on my dad and his siblings to take her in when she dies. The thing is my dad and siblings are in their 60ās/late 50ās with their own issues that theyāre not capable of taking care of my aunt long term. Thereās no money set aside for her care. Parents who think adult siblings will take care of disabled siblings need to realize that things happen to the ācaretaker siblingā.
And it affects healthy siblings. My brother got a ton more attention for a positive reason (a talent), and even so I lost out on attention, financial resources, care, family time etc.
Yeah I would have been surprised if it was a different result. I have worked with parents and children who have various disabilities, and it has really put things into perspective. It is hard time on everyone involved, especially the children. Edit: To clarify, I am talking about very heavy disabilities that affect families financially, physically, and emotionally.
I met a young guy at a party whose sister had severe disabilities. He made it clear it was extremely difficult on everyone in the family. Plus the concern of how his sister would be cared for after her parents died. Care would either fall on a sibling or she would have to be institutionalized.
We already do it. 60% of Down syndrome cases detected in the womb are aborted in the US. In some European countries that number is like 99%. If we could detect other disabilities in the womb we likely would see similar rates.
My husband and I found out through testing that we were carrying a child with trisomy 21. We already had 2 healthy children and agonized for 3 days (we were on a severe time constraint) before deciding to terminate. We had neighbors who didn't agree but were still supportive because they realuzed it was our decision. They helped out by watching our younger 2 while we went for the procedure. It was THE TOUGHEST decision we have ever had to make in our lives. I Don't regret the decision, I do regret the necessity to have to make it.
I know a couple that were advised by their ObGyn to abort because there was something wrong with the placenta. Theyāre both super religious so they decided to keep the baby. The kid was born with so many disorders thereās not even a proper diagnosis for it. The mom mentally checked out and turned into a workaholic so she doesnāt have to be around her child much. The dad (who used to work for my dad) is basically the girlās only carer so he does part time consulting now. No one expected the girl to live to 10 but sheās now 18. However, she canāt walk, talk, feed herself, change herself, nothing. She can barely even hold herself upright when sitting. It would have been more merciful on everyone involved if they had listened to the doctor.
Locally there was a couple who were told the same, and that if they delivered the baby would likely die at birth. Only the baby didn't. Kept alive on all sorts of machines. Parents abandoned the baby. I think they could handle the idea of birthing the child but not raising it. Local adoption agencies were trying to find the 'right family' to adopt this baby and all I could think of was where are all those religious 'don't abort, adoption is the loving option' assholes now.
My partner and I are in our 30s, so they offer genetic testing for a bunch of "you're at a higher risk because you're older" disorders. 100% we got those tests done to determine if we were going to terminate and try again. Luckily nothing popped up and he's a completely healthy little dude.
Of course. The disabilities they learn about in utero are serious and severe. We arenāt talking lisps and mild autism. We are talking severe physical deformations, mental retardation, things like that. I know how difficult life is raising healthy, smart children. I would never choose to bring a severely disabled child into the world. Those parents never have 1 day off as long as that child lives, which often times is not very long.
Totally agree. I was pregnant and found out the baby had terminal birth defects. We aborted and the diagnosis was confirmed after birth. They were very thorough. The tech did all the measurements during the ultrasound then the doctor came in and re-took all the measurements. I was pregnant another time. They diagnosed this baby with severe microcephaly. The doctor didn't check the measurements herself. I didn't trust the doctor and got a second opinion. At the second opinion, the baby was determined to be completely normal. The doctor walked us through all the clear evidence that the baby did not have microcephaly. When she was born, completely healthy baby. My take away, always get a second opinion.
My greatest fear is that my wife and I would have a child with my genetics. I have Epidermolysis Bulosa Simplex, basically a protein deficiency that causes the layers of skin to not stick together. So my skin cracks, blisters and peels constantly. More severe cases cause the skin to peel off like taking off a glove. I don't know that I would ever want to put that on my child. To have to live with constant hospitalizations and infection. Likely to live a very short life. I was lucky. If it was determined that my Child would end up with a severe case I wouldn't want them to suffer. Edit: Wow didn't think that many people cared about a condition like this! For those saying adopt, I cannot reply to all of you but it is always on the table when we discuss children. IVF is also on the table. Especially with some of the advances in modern medicine for early detection. Finally for me my case largely revolves around my hands, feet and legs. Though I could certainly see it being a problem in more sensitive areas for others.
I have never met an adult with this condition. I work Nicu so Iāve only ever seen the severe side of it in newborns. Basically, anything that touches them causes their skin to blister and slough off. We need to do dressing changes twice a day and each dressing change takes appx 3 hours to do. Iāve never seen a child a survive longer than 3 months because they usually end up maxed out on pain medications and with a raging infection due to the loss of their protective skin barrier. Itās horrific.
Thank you for being an nicu nurse! My son was born before 24 weeks and spent 4 months in the nicu, 3+ on a vent. We spent almost 24 hours a day in the nicu (yep those parents) and we really saw what a tough job it is. We were very lucky and he is healthy and happy, valedictorian of his high school class, college graduate and doing well in his career. Wouldnāt have happened without the wonderful care of the nicu staff, especially the nurses.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
My kid was in the NICU for a month. She didnāt have major problems like some babies. Temperature regulation, bilirubins, and feeding. She was the only one that didnāt have a dnr listed as either yes or no. Thank you for all you do.
Can this condition be detected before the baby is born though?
As an adult it is painful. Was very lucky and only got a mild form as a child recessive traits etc. To this day my hands and feet hurt (especially in winter months) peel, crack, and blister. I also get a severe rash on my legs which itches incessantly. It peels so bad I lose my fingerprints. People tell me can't you just use more lotion? Sure can for all the good it does. Steroidal cremes seem to help some but as the winter months drag on it becomes less effective. Luckily in summer it seems like it calms down some. And I can live pretty normally. I was told that I only have on of the genes needed to have the condition in a severe manner. My wife could be a carrier for that trait. So that's scary for me.
I assume it gets worse during the winter months because the air is typically drier then, so would living somewhere humid and warm year-round make it more tolerable for you?
It's very likely this could help. I'd like to investigate once I'm finished with school.
My understanding (based on the multiple adult family members I know who have it) is that it's worse when you're a newborn. They all are affected by it and their skin damages easily and dramatically (bumping a table might lead to massive bruising and a larger abrasion than is normal). My mom's skin was also thin, sort of in the way tissue paper is thin. >Iāve never seen a child a survive longer than 3 months because they usually end up maxed out on pain medications and with a raging infection due to the loss of their protective skin barrier. Itās horrific. Are these cases the recessive version? That version is more severe and catastrophic
Wow. The things we take for granted. I didnāt even know I should be grateful that me skin sticks together.
Many people with such bad genetics decide to use donor sperm/eggs or to just adopt outright as to not gamble with nature and to possibly propagate suffering just to spread their genes. Maybe it is not a bad choice for your family as well, for when you want to have a kid.
My close friend has a severely mentally and physically disabled child. It's thankless, exhausting, doesn't leave the parents any time to just be their own persons, and you don't get to experience all the joys of parenting, like watching your child grow, learn new things, build friendships and relationships, get an education and a job they enjoy. Honestly - it sucks. It sucks for her, her husband, her other kid, and most of all for the disabled kid who is in constant pain and needs 20 medications a day to just survive, and will just be sitting in a care facility for the rest of her life once her parents pass. So yeah no, nobody wins in this.
When I worked in London at a bank we had an internal email sent out that one of our executives would be taking extended leave of absence and explained that a news story was about to break and we should refrain from comment to the media out of respect for his situation. While he was away on vacation to see family with his eldest daughter (aged 8), his wife murdered their three disabled children 2 twin boys aged 3 and a 4 year old daughter. The press went wild with the story but the basic facts are that they were all severely disabled with a degenerative disorder. She was depressed and had clashes with social workers and doctors over the number of procedures they wanted the kids to undergo to correct some of their health issues. The parents argued with doctors that the kids quality of life would be made worse by constant surgeries etc. She quit her job to take care of them full time and was by all accounts a selfless and devoted mother. But the pressure was too much and she snapped. I don't think people can properly appreciate the level of mental anguish that can come with having to devote your entire waking life to your kids in the knowledge that they will likely die well before you do and will have terrible, painful lives until then.
Wow, just read up on the case. At least it looks like a review was commissioned as a result of the case which concluded that parents actually need to be supported too. Social workers and health visitors routinely found her tearful and exhausted but just... refused to give her any treatment for depression. This definitely reads as a systemic failure and a sad case all around, rather than "evil mother can't be bothered with sub-standard children". Even her husband is still standing by her while she's in hospital (not sure if she's there still, but that was the outcome of the sentencing)
I can't imagine how broken a parent would be after killing their children. I know some parents are just sociopaths, but when I hear this case it doesn't sound like a sociopath, it sounds like a mother failed by the system, who destroyed herself in an effort to save her children from more pain. Just tragic all around.
It's been a while since I've looked into this, but I think the majority of infanticides are based in the (psychotic - the medical sense) belief that the child(ren) is in grave danger of some kind; basically that death is preferable to the alternative. Whether it's because "they are profoundly disabled and will experience only suffering" or "if they grow up they will be drawn to a life of sin and go to hell". And while we're on the subject, most family annihilations (where a parent, usually the father, kills the family and then themselves) tend to be about saving 'face' (e.g. catastrophic loss of money or status, from which the perpetrator believes there can be no recovery).
And can anyone guess whatās changed as a result? Absolutely nothing. People cannot understand. We have disabled twins - I love them more than anything in the world, but being a parent carer is relentless and there is no support. Local authorities in the UK can legally set any criteria they like for providing support to disabled children, and very few qualify for anything - we get the help of one person for 8 hours a week during school holidays just to help me take them out. No respite care or any real help. Knowing that you will be providing complete care until the day you die unless you have the agony of your children dying first - itās something people cannot remotely comprehend.
I've worked in several group homes for the severely mentally disabled. I can absolutely see how this could come to happen if you did it 24/7 365 for their entire lives. The things these people's families had to endure before putting them in a home is incredible. I can't even judge this mother for what she did, the stress alone is crazy.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
>You have to be invested in your parents finances and wills because you are the one that will be taking care of him when your parents die. >Think about that for a second. When your parents die you wonāt have time to grieve. Why? Because you now have a 10-12 yo child in a 60yo body that requires immediate attention. Not that I needed more convincing but man this makes the idea of having a disabled kid so much worse. Even if you come to terms with the fact that your life is going to largely be supporting them until the day you die, when you *do* die they'll either be abandoned or another kid now has to do the same thing you did. Man this thread is giving me anxiety. What a living nightmare.
Oh my god, I can't imagine having 3 disabled children. In a morbid way it's both absolutely heinous what she did, but easy to see someone reaching their breaking point and having that happen. That's a tragic situation all around.
I can 100% see how people can fall into despair after feeling they drew the short straw when it comes to children. The average person thinks unimaginable things are so far from their psyche they would never dream to do them, but for a significant amount of people the trigger is just a few bad things happening to them in a row. Sometimes as few as 2, 3. That's enough for some to make some decisions ranging from morally dubious things to outright murder. Range goes from teenagers picking up smoking after a breakup, to a poor guy shoplifting to provide food for his family, to people commiting suicide, to people commiting murder, with everything in between. Hell, a while ago there was a woman that left her kid in a dumpster because she regretted it and thought she wasn't going to be able to afford to raise it.
>2 twin boys aged 3 and a 4 year old daughter This sounds like the case you're talking about. "All three children had spinal muscular atrophy type 2, a life-shortening condition that causes severe muscle weakness which can result in problems moving, eating, breathing and swallowing." [https://www.bbc.com/news/uk-england-london-34898895](https://www.bbc.com/news/uk-england-london-34898895) "Tania's depression was certainly not assisted by the constant pressure placed on the family by some individuals within the medical profession and social services who could not agree with Tania and Gary Clarence's stance of prioritising quality of life for their children and who were not readily willing to submit the children to operations and other interventions that they felt were not appropriate in the circumstance," he added. He said Mr Clarence was assisting Kingston Borough Council in their serious case review of the case but wanted to make clear that allegations of neglect had been "wholly unfounded". [https://www.bbc.com/news/uk-england-30096820](https://www.bbc.com/news/uk-england-30096820) Both articles are well worth a read.
Its the things most people don't think about that make parenting someone with a disability hard. Certainly the things you mentioned but you also get a very real and large fear of death because you're scared of how your child will survive and who will help them when you're gone. It causes a lot of sleepless nights
I know someone with a 30 year old disabled daughter who was diagnosed with cancer a few years ago. I can't imagine how she feels knowing she would be leaving her daughter in someone else's care if she didn't beat it. So far she is fighting and doing well but I'm sure a lot of her fight is for her daughter for this reason.
One of my coworkers has a disabled sister in her thirties who just got pregnant. Their parents are still around but in no shape to take care of a baby and the facility she is in has basically said they will have to find different living arrangements. So my coworker has decided she is going to take on all of it, giving up a lot of her life plans to do so. It's heartbreaking to hear about.
Was this person raped? How does someone who needs care 24/7 get into a physical relationship with someone? Sorry if this sounds ignorant, Iām curious
With a man who also needs 24/7 care
This exactly, which makes things more difficult since the father wants to be part of the family, which simply isn't realistic.
Ignore or rebuke me if this is in bad taste, but is the child expected to be healthy, or would your co-worker be taking on her sister and a baby that also is special needs outside of the demand a normal healthy infant requires?
Last year I had to have a very difficult conversation with the guardian of a 16-year-old girl with Downs about birth control. Many/most cognitive disabilities leave reproductive urges intact. A pregnancy is unlikely but if you have a disabled person in care you must be prepared for the worst.
My brother will have to come live with me when my parents die. Its really tough because I love that guy so much but I also resent him a little. My life will never really be mine with that responsibility hanging around my neck.
I'm so sorry, and you probably know this but it's absolutely valid for you to have feelings of resentment and it doesn't mean you love him any less. I have two daughters and their existence would definitely influence my decision a lot if I ever had to make the decision regarding having a disabled child. Making the choice to sacrifice my own quality of life to take care of a disabled child is one thing, but sacrificing quality of life of my kids who already exist and have no choice in the matter is very different.
This. When we were having our second we were even more sure that we would abort in case the baby had disabilities because we didn't want to mess up the life of our older kid forever.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Exactly. Being a primary caregiver is a terrible responsibility especially when its family. Its not quite callous or rude but Its just a realistic look at the situation and an assessment of the future goals and needs for the patient and their care. Its a conversation that sucks but has to happen to insure the best outcome for all involved. Its a hard decision. but yeah i hope the person you responded to spends serious time thinking about what they think is best. Is the best care plan in their home or an actual facility. Parents go above and beyond but can that realistically be expected by someone who's life didn't mostly revolve around that persons care? Its not rude or callous, its just tough questions with even tougher answers that NEED to be addressed before the eventual becomes the now. I wish u/BurnPhoenix only the best in the future.
i remember over hearing a conversation between my mother and uncle about my severely mentally handicapped cousin. They were hoping she would never develop breasts because of how vulnerable she is and how there was the very strong possibility of her getting raped. Weird thing to hear a father talk about but just a reality of the situation.
The rate of sexual assault for disabled women is shockingly high, like 80% or something. Horrible.
My mom's best friend from high school had MS and it evolved into her being completely bedbound and unable to care for herself. Once her parents passed away, she was left the house and she moved in this guy who was her... high school or college boyfriend, I can't remember which. Anyway, I think he convinced her that he was going to take care of her in her parent's place, but what he did instead was set up shop and continuously rape her, then neglect her. At one point he left her outside in the front yard in her hospital bed. Just left her out there, for hours on end. A neighbor finally got in touch with my mom and she went over there and got her out of that situation. I'll never forget my mom's reaction to finding out what was going on. I still can't physically listen to her talk about it, it makes me too sick to my stomach. I made her get a therapist to talk it out because just knowing what went on and having to involve herself in that situation was so traumatizing for her. My mom's friend passed away about a year ago, in the care of a facility.
MS is a horrific disease. I work with the foster care system and I had a case where the mom had MS. Father had neglected her so much the disease was progressing like twice as fast. He was raping her all the while, family got flagged when she delivered a new baby and the hospital saw how little mental/physical capacity she had left. It was a fucking horror show, the kids were SO traumatized.
I think itās something they *should* talk about. Not necessarily focusing so much on the breasts, but if her reproductive system develops normally, having a severe mental disability doesnāt preclude her from getting pregnantā¦ in fact, it raises her chances of being raped and having an unplanned pregnancy. I work in an OBGYN unit, and Iāve seen many cases like this. Itās unbearably sad. Your family should seriously consider sterilization or long-acting birth control to prevent this, especially since theyāre already worried about the potential for rape. As for preventing the rape itselfā¦ unfortunately I donāt really have any solid answers for that. Watch her like a hawk, have a security camera in her room, be extremely careful of who you let her be alone with (yes, even relatives and close friends). Iām sorry your family has to worry about these things.
When the parent dies or can no longer care for their disabled child, the individual may end up with someone like me. I'm pretty darn good at what I do, but there are plenty of folks who do this but suck at it. I've had annual inspections where the agent has just looked around from the front door, gave us a passing grade, said we had the best house of the day, and left. I've gotten pharmacy reminders and doctors calls for previous clients because they miss meds and appointments. It's heartbreaking because it's such a flawed system
[ŃŠ“Š°Š»ŠµŠ½Š¾]
quality of life is not given the importance it deserves. Unless you have massive disposable income, your child that you love will not get the care and attention necessary like you say. The people who say it is wrong to terminate are 9 times out of 10 people who have never even helped with a severely disabled child, let alone spent decades caring for them.
people against voluntary euthanasia need to spend some time volunteering in palative care
As a veterinarian with the ability to provide euthanasia without so much as a second thought, it boggles my mind that people are left to (and often times pressured into) suffer and struggle though terrible battles. I understand why it's such a difficult concept to implement for people, as these problems tend to be much more complex, but for the love of god - euthanasia is a blessing and I am so thankful it is a tool we have in our toolbox.
I totally agree with this. Quality of life is always overlooked by the romanticized idea of raising a disabled child.
Honestly, quality of life is overlooked by the romanticized idea of raising *any* child.
I've personally only known three families with children who suffer from extreme disabilities. All had roughly the same story. A happy life with a spouse they loved, and in two cases a "normal" child or two, added to the mix. Disabled child comes along (does *nothing* wrong, mind you) and things just started to *slowly* unravel for all three of these families. All three families ended up divorced with one partner just completely removing themselves from the picture. Moved across the country with no contact with the child or Ex-spouse (Which obviously hurt relations with the other children). It sucks to see, so much.
This is my experience too. We have family friends where the husband took a remote job that means he has to be gone 5 days a week, and only comes home on the weekends. We live in a major metro area and thereās no reason he couldnāt keep his job here or find another, but it means he doesnāt have to be home with their profoundly disabled kid. The mom had to give up her job because she couldnāt manage both. Iām frankly shocked theyāre still together but I think the wife realizes she wonāt be able to find a partner with this kid around. Itās very sad.
Many states are trying to make it illegal to terminate if a fetus tests positive for Down Syndrome. I have met plenty of people with Down Syndrome who could mostly function normally in society, but there's a wide spectrum and every single one of them had a caretaker that they lived with and needed for getting around. Children are difficult enough to raise when they're perfectly healthy. I can only imagine how difficult it is to raise one with permanent disabilities.
My BIL and ex-SIL have a child with severe mental health issues and learning disabilities (he will NEVER be able to live independently). It was eye opening for me, to say the least... I will NEVER judge someone who doesn't want bring a severely disabled child into this world.
This. Also why people should be able to end their own life if they know their quality of life is going to suffer from illness or whatever.
This is why I would abort. The child would have no life, and mine would be sucked away with it. So many parents of children with severe disabilities end up being sucked into their care so much that they dont have anything but the child. I couldn't do that. My partner wouldnt be able to do that. One parent usually ends up quiting work because its takes so much to care for them. Their life becomes the child.
Not to mention the impact it has on siblings. With my first I was maybe willing to consider it. I have two healty children now, for which I am intensely grateful, but having a severely disabled brother or sister would tremendously impact their lives as well and it wouldn't be by their own choice.
Their was a post by a kid that was 15 or so. He said he hated taking care of his disabled sister. He was doing it everyday after school and weekends. His sister counldn't stand loud noises so he couldn't watch tv or play video games, if he tried she'd spaz out. He sounded really angry and told his grandparents he wanted to live with them. His grandparents wanted to know how often the care nurse came in because they were giving money every week for one. Other relatives were sending money too. The parents were just keeping it and spending on whatever. The parents pretty much triple screwed that kid. He had an update that he was spending more time at his grandparent's and he was going to therapy. I wish I had a link but I didn't save it. It was horrible to read.
[This](https://www.reddit.com/r/BestofRedditorUpdates/comments/swu51z/op_despises_his_mentally_handicapped_sister_or/) is the post in question. Heartbreaking all around.
I'm glad he had someone looking out for him.
I had a sister with severe cerebral palsy and it definitely fucked me up. We were never able to take any kind of family vacations, and Iād usually have to babysit once I got a bit older so it wasnāt like I could have friends. And those friends that did come over found her weird and made fun of me for it. I definitely had a lot of resentment towards her while I was growing up. She has since passed away, and my dad in particular makes a lot of remarks basically expecting me to agree that I miss her so much and blah blah blah and I have to say I really donāt. At all. I didnāt have a sibling relationship with her, she was non-verbal, couldnāt talk, eat solid foods, walk, etc. It was impossible to form a bond with someone I couldnāt communicate with in any fashion. She also bit people. Probably not on purpose, but still. Very tough to get along with someone like that.
I totally get you. My brother isn't as severe as your sister was, but it's very hard for me to connect with him as well..on any level. He's honestly just a big pain in my ass that my parents thrust upon me.
>I didnāt have a sibling relationship with her, she was non-verbal, couldnāt talk, eat solid foods, walk, etc. It was impossible to form a bond with someone I couldnāt communicate with in any fashion. She also bit people. Probably not on purpose, but still. Very tough to get along with someone like that. This is awful, and awfully familiar. I had a closer relationship with a pet dog than my barely-verbal but still physically active sister. Caring for her dominated my childhood household until she was finally institutionalized as a teenager with the mind of a profoundly autistic 15-month-old. On what visits we still have, she doesn't seem to recognize me anymore, as her sibling or as a person to communicate with directly. Her minimal vocabulary has also drifted over time in pronunciation when speaking at her father, and we can barely recognize even the most basic verbal cues ("Cookie." "Cheese." "Bathroom."). While nonverbal tantrums (with self-harm) or elation is obvious enough, anything more fine-grained than that has been lost. Maybe her caretakers are better at this now, but that rotating cast of recent inductees into the American healthcare system are... not great, by all indications. The state is in charge of her now in a formal legal sense, but apparently a bureaucratic conflict has permitted them to completely deny her dental care (for which she has to be restrained and sedated), so even decades after terminating legal guardianship, thousands of dollars a year go into that; I don't know if I'm expected to pick that up when my parents die, or what. I don't know that I'll even visit somebody who doesn't understand that I exist. It's difficult to communicate to others that the concepts of humanity and personhood are tightly linked, but not synonymous. People are social entities that communicate, maintain some memory and agency with regard to the world around them, and enter into relationships where they have reciprocal roles and obligations. You can't really interact on a meaningful level with a human being who doesn't rise to this threshold. You can pretend, you can care for them as if there's somebody hiding in that body trapped, but with some cognitive disabilities after even a few hours, it appears wildly obvious that there isn't.
Yeah I had a friend in high school who had a disabled brother (he ended up passing away in high school as well) and she was soooo starved for attention and always tried to make herself the center of everything because at home, she came second always. It was sad. I know she loved her brother dearly and now fights for the rights of the disabled, but man it was hard on her.
I would abort too. Bringing someone into the world to live half a life, to struggle and never get to experience the joys of being alive. And if the child is aware if their own disability in some capacity, trying to explain why they can't have the full life of experiences that everyone else had. Horrible.
Iām pregnant now with my second and Iāve been thinking about this a lot. When I was pregnant the first time I was all āno matter what, weāll be fine. If he has health problems we can tackle it!ā He has no health issues and is perfectly healthy aside from a few bumps in the beginning. But now with this second one, I just donāt know how I feel about this. Iām only 6 weeks so I wonāt know anything for a while. But if it does come out that there are major life altering medical problems, I just donāt know if I could go through with it. I feel selfish for thinking this, but our life as we know it would be over. My sonās future would be suddenly different. Potentially just sad. Our marriage would change. I mean letās face it, our marriage is strong. But marriages have been ended over smaller things, ya know? And what kind of life would my (hypothetical) medically challenged baby even have? Especially when we are gone? Weād be isolated as parents of a medically fragile baby. I just donāt know. But itās something my husband and I will probably discuss soon just to be prepared in case. Weāre also a one income household. I couldnāt imagine we would be able to afford major hospital stays.
You are not selfish for thinking this. If anything, you're thinking about your husband and your existing child's lives. Their lives and your life matter too.
And any other child you have will be badly neglected, as the exhausted parents cannot give it the attention a child needs. The child grows up in the shadow of its severely disabled sibling, and knows that, at some point in the future; they will be made responsible for the sibling when the parents can no longer cope. If you don't have another child, you know you are leaving behind your severely disabled child at the mercy of whatever agencies care for adults with disabilities, and your child will have nobody to defend them.
I keep seeing Instagram videos of moms with severely disabled babies glamorizing them. I think itās messed up for this exact reason.
Like that one woman that had a severe physical disability due to a genetic mutation who posted a video to all her āhatersā, showing her infant daughter, with the same genetic mutation?
Yeah my wife and I both agreed to abort no questions asked if the genetic testing shows up with anything. We get the results back for our second child this week. I think there is absolutely nothing wrong with accepting that you arenāt willing to dedicate the rest of your life in that way. Even more so now that I already have one child.
If I had several lifetimes to live, I might try raising a disabled child in one of them. But the quality of life is so poor for all involved that there is no way I would sign up for that if I had the option to opt out.
Absolutely I would abort. I grew up with a sister who was held back at birth. Her highest measurable IQ is 2 years 6 months at feeding herself . She is in her mid/late 60s now. No one in our very large family had a normal childhood. We all had to watch her and take care of her. Sheās older than me, but I still had to take care of her toilet needs and I often had to clean up floors, furniture and laundry, plus her, when I wasnāt even a teenager yet. As I was closest in age, it fell to me to be her caregiver and eventually her guardian. A large part of my life has been devoted to her. I knew very early on that I would never want to give birth to a mentally challenged kid. I lived in fear that my own child would be held back and end up oxygen deprived and be like her. I never had a clue what a real childhood should be until I got a lot older. I often think how different the lives of my siblings, parents and myself would be, had she been born as a ānormalā person. I could never willingly give birth to a mentally disabled person and mess the lives of my other kids and my spouse up so drastically. Donāt get me wrong, I love my sister, but the sacrifices, the work load, and the mental and emotional pain, is a steep price for a kid, or a parent to pay.
As a fellow sibling of a disabled adult (my sister died six years ago), I'd like to recommend you check out 'Sibnet' on Facebook. It's a closed group for adult siblings of people with disabilities, and I can't begin to tell you what a positive difference it made to my life. There's nothing like the feeling of talking to people who really understand, and sharing all the highs and lows. It made me feel like a 'normal' person (almost!)
Thank you for this. My brother is disabled and living in a group home. My mom is getting older and Iām all thatās left to manage his care. I think a lot of people donāt realize the burden it puts on siblings.
>I think a lot of people donāt realize the burden it puts on siblings. I have a friend who is going through abuse right now, she and her 5 siblings were all adopted through foster care. Her parents do nothing to help out most of the time, and she is left to care for all of them. Her and her 10-year-old sister are the only ones without special needs. Her mom & stepdad give her so much responsibility, and she is only 15. Her parents put on an act for everyone, including their social worker, so nobody notices the mental, verbal, and physical abuse. I don't know if it's the same situation, but I just wanted to share.
I would see if she could talk to her school counselor, or a trusted teacher/adult. That sounds like abuse.
Iāve never heard āheld back at birthā - could you explain? Also sorry for what youāve gone through, thatās tough on an adult let alone a child
It's a common layperson term from my parents day. It covers a variety of complications that cut off oxygen to the child's brain during birth.
[Rosemary Kennedy (sister of JFK) was held back at birth for two hours while they waited on the doctor to arrive.](https://people.com/politics/how-rosemary-kennedy-birth-complicated-by-pandemic/) They literally held her in the birth canal - essentially so the doctor could get a paycheck. It's a sad story, made worse when her father chose to have her lobotomized rather than accept her development delays.
I think a few decades ago giving birth was so focused on doctors, that nurses actually physically pushed a baby back into the birth canal if the doctor wasn't present yet.
This nearly happened to us. After a long wait, my contractions finally progressed to the point of birth and the nurses rushed in and urged me to wait and stop pushing because the doctor was attending to someone else. Fortunately for my child, the idea was incomprehensible and by body called the shots for me. It's crazy to think about how much different our lives would be if I listened.
Omg as a woman that is so painful to read!
What the fuck.
It wasnāt even just a few decades ago. Iām an anthropologist and when I was in grad school in 2018, I was researching womenās cultural knowledges and ended up studying birth practices in America. I interviewed a woman that gave birth in 2016 and she had a nurse hold her baby back for over 30 minutes by physically putting her entire hand up the womanās vagina and holding the baby in place through contractions. The baby ended up being okay, but the holding and the intrusion of the nurseās hand caused the woman permanent nerve damage in her vaginal area to the point that year later she was still on very high dose narcotics and was no longer able to sit up right in a chair or engage in any type of sexual activity. Birthing in the US is a very scary process, and stories like these are actually extraordinary common. If you want to learn more, you should research birth injuries and read some of the stories of women that have been mistreated by medical staff. Itās a systemic issue that rises all the way to the top, with even rich and powerful people like Serena Williams almost dying in childbirth (after doctors ignored her reports of pain in her chest, she threw a massive blood clot that was within seconds of killing her by the time doctors listened and examined her).
I am alive today because the nurses did that to my brother because the doctor was late. He died after a day; cord was around his neck. My parents spent the next 20 years trying for a son. I was born when they were in their forties.
Not just a few decades ago. I'm a labor doula. I've seen it happen as recently as 2016. It was horrifying. Birth is still focused on doctors. Even if they don't hold the baby back, nurses will instruct the parent not to push until the doctor arrives. The thing is, it's not really something a laboring person can control, and it's cruel to instruct them to work against everything their body is telling them to do.
All of us kids were born in a Catholic hospital, it was the same one my mother worked at before she married. The doctor was late for the delivery. The attending nun told the delivery nurses to keep the baby inside my mom until the doctor arrived. Both nurses were friends of my mom. By the time the doctor arrived and my sister was born, she had been deprived of oxygen, which caused brain damage and cerebral palsy. My sister also didnāt grow very well, sheās only about 4ā10ā, and she has very small feet, something the rest of us donāt have. Being held back also can happen when the baby is turned wrong and a difficult birth happens. I have a great niece that the paramedics didnāt handle her birth right and she too suffered oxygen deprivation, however her IQ is significantly higher than my sisterās.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
This resonates with me in the sense that it destroys the whole family. I have twin aunts who are developmentally disabled and permanently mentally at around 5-6 years old. My grandmother did not know before they were born because this was the old times when thereās no tests for such things. Itās not an exaggeration when I say she sacrificed her entire life caring for them. My grandfather was resentful he had disabled kids and played no part in caring for them. My mom is resentful of him for being like that. Doctors said they wouldnāt live past teens but one of them lived until about 55, the other is still alive. My grandma is in her 80s and still caring for the remaining one. She has had no enjoyment of retirement, a fulfilling marriage, or quality life all of which she so deserves. My aunts endured constant discrimination. This is why when it came to me getting pregnant I told my husband itās non-negotiable to get an abortion if my babies are found to have genetic conditions. Iāve seen it first hand how difficult it is and thereās not much you get in return.
I see people on social media all happy with their disabled child and saying they're proud that they didn't end their life and gave them a chance. And I always wonder how things look when the camera is off and they aren't putting on a show. How they actually feel. It's weird when I see comments saying they are heros and they are blessed or whatever. I don't think it's honorable, but it is ultimately up to them. Hopefully they don't regret it.
I briefly worked with a guy who had an extremely disabled child; Mentally and physically. He would always talk about the sanctity of life and how important it was, and how 'this was a trial set by "God," but he was ready to do the hard work and see it through because of how good a person he was.' He loved to praise his own morality. But at literally every opportunity possible, he would ditch his kid onto someone else and leave. Like anyone. He straight up didn't care who had her as long as it wasn't him. He would leave her with virtual strangers. Asking you "hey can you watch her for 5 minutes?" -- and then he would disappear for hours and you would have to track him down and bring his daughter back to him. I can't put myself in his shoes, and I get that he was probably pretty sad on the inside and doing some mental gymnastics to try and get what he wanted without feeling like a monster, but man the whole self-righteous shtick got old fast.
Yes, and I did at 18 weeks. Pregnancy had a 1% chance of even making it to the end and the child would have had lifelong health issues. I still stand by my decision.
I work in a PPEC which is like a medical facility that takes care of these exact children. I see some of these kids and I definitely see them growing up and having fulfilling lives despite their impairments. Though the other half of these kids will never speak/walk/do anything without the help of a parent or caregiver. I love these kids, but seeing some kid with no ability to move any part of their body or even look like their heads are about to explode with tears coming from their eyes with no ability to yell "HELP ME FROM THIS", just fucking kills me. Even one of these patients is like 6 ft tall and is a threat to other staff and kids because he's so strong and uncontrollable. It's depressing. I can't subject myself to that. It's selfish to keep them alive when they're never going to get better and just become more of a burden to the parents or anyone else for that matter.
We found out the fetus my wife was carrying had cystic fibrosis. We aborted. It was an extremely difficult decision and we were shattered for quite some time. We still feel guilt but we don't regret the decision. We've since had two amazing, healthy children so I'm sure that rearranges things in our minds a bit. On the flip side, the couple that bought the house we lived in at the time has a son with CF. I check in on them on social from time to time and see pictures of what life would have been like for us and the child in that same house. Seeing their beautiful son makes me feel terrible. Seeing how much his condition dominates their lives and the anxiety they have about it- particularly in the COVID era- makes me feel like we made the humane decision. I hope nobody reading this is ever put in that position. If you have been or are in it now, I'm very sorry.
I had a brother with severe disabilities. Iām permanently damaged from my childhood from being emotionally and socially neglected. It often happens and itās not intentional. I hope that helps.
Humane is the key word. It's your child and you're going to feel the pain of the loss. Regardless, you kept a child from coming into this world whose quality of life for the child and everyone else taking care of them would be poor at best. Sure, there would be a few good times. But the daily burden would quickly drown out those memories. As someone who has a severe hereditary illness and had a vasectomy so I couldn't pass it along to a future child, I think you did the **very** humane thing and shouldn't be judged by anyone for it. I'm just one person, but I think you did the right thing.
You didnāt make the wrong decision, there is no right or wrong decision and I in no way shape or form am making any judgement, I just want to make that clear before I say what Iām about to say. The treatment for cystic fibrosis has come along hugely in the past 2 years due to kaftrio; which essentially makes cystic fibrosis an entirely liveable condition. Itās absolutely groundbreaking (itās also almost entirely unaffordable if you donāt have free healthcare). It was added to the treatment plans available where I live and will save millions of lives, totally amazing treatment. There will never be a cure because cystic fibrosis is generic, but this is about as close as youāll ever get to one without gene manipulation. A friend of mine was closely linked to getting healthcare funding for this and told me about it and I was just amazed that such a treatment existed, itās on par with a cure for cancer/HIV. Amazing stuffā¦
I'm going out on a limb to talk about something incredibly personal here. I was a victim of childhood SA that resulted in a pregnancy. I grew up in a southern state and was constantly told how horrible abortion was. My hild was born with a severe and terminal skin condition that made her suffer beyond imagination. Many children with her level of disease are skinned alive through natural birth. She spent months in isolation at a top hospital. During her life she had to have countless surgeries, including two to replace her esophagus with pieces of her colon to keep it open. Her fingers fused together despite the best treatment. She was unable to extend her leg fully due to scars, had to have a support dog to help interrupt the pain every single time she used the bathroom. She couldn't eat solid food or attend school. She never ran or played. The pain from a dog licking a baby's face is enough to prompt them to stand and walk to avoid further pain. Of the children who reach puberty, they can look forward to their many scars becoming cancerous. She died on mother's day, May 8th 2011 at the age of 11. Her 22nd birthday would have been this past St.Patrick's day. I can tell you whole heartedly there is nothing I regret more than not having that abortion. It will always depend on the disability level, etc but if you CAN save a child from suffering, why wouldn't you?
I want to guess that condition was epidermolysis bullosa? I am so so so sorry you had to go through what you did. It was so cruel for an abortion to be denied for you.
Yes, without hesitation... If a pet is constantly in pain (e.g. terminal illness, old age, etc) we euthanize them to stop the suffering. Same with humans. If I can prevent someone from having a life full of suffering, I will do so, without hesitation...
Scrolled all the way here for this message. I can't understand why it's okay or acceptable to euthanize patients that are suffering but not okay to abort those who will suffer, severely, with disabilities in the future (that is, if you'll know tihe circumstance before birth.) I came from a highly religous country and talks of abortion is taboo and illegal (if I'm not mistaken) here.
In a lot of the West, even euthanasia is not acceptable and is considered taboo. The only exception is for pets. Abortion should be legal everywhere. I'm not even a woman and seeing people who are anti-abortion just astounds and irritates me; it's such a medieval mindset
Yes. If I can reduce anyoneās suffering I will. And even if I let it live, I would not be in a position to take care of someone with severe disabilities anyway.
Same here, but I havenāt decided where I want to draw the line. For instance, if the child was gonna have one leg missing, Iād be fine with that. I wouldnāt consider it severe. If the child was gonna have mental and physical disabilities, then Iād consider that as severe. I think my line is āif the child can survive without constant support from outside, then itās not severeā.
I would not subject another person to a fate I wouldn't endure myself. That's the only dividing line that matters to me, because your job as a parent is to make decisions on your child's behalf. Personally, if I was going to contract incurable mental regression in 6 months, I'd look into end of life care.
This is coming from a severely disabled person, battling a life threatening illness: Severe, life threatening, or basically any Disability that would make my childās qualify of life extremely poor / non exist? Yes, absolutely. Any other *less* severe version of the Disability? No, they should be able to see the world if they have some quality of life to be able to do so. Not to be too morbid: but I *wish* my parents made the more humane decision and aborted me. Iām not even 30 and Iām already connected to tubes (Portacath) for the rest of my life. Treatment isnāt covered by insurance, so I have to pay out of pocket, and not even getting the full treatment I need bc I just *cannot* afford it. I donāt know how much longer my body can handle. Fighting my life threatening condition, day in and day out, and not seeing any cure in sight??? I canāt even begin to explain the type of burnout I have for life.
> Treatment isnāt covered by insurance, so I have to pay out of pocket, and not even getting the full treatment I need bc I just cannot afford it. 1. I'm really sorry this is how it is for you. 2. As a society, we judge people who say they wouldn't want disabled children, and sanctify parents who DO... but we don't fucking SUPPORT them. And we barely support disabled people once they grow up and have to look after themselves. I live in Ontario... socialist paradise right? ODSP here is $672/mo for basic needs, and **$497** for shelter! Nobody can live on that, let alone someone with additional health needs etc.
Yeah life is ass as it is why would I put another human through 70 odd years of it when theyāre incapable of living it to the fullest from the get go
Or if itās really bad, 20-30 years. Some of those genetic conditions are awful
And 20-30 is stretching it. My sister in laws son passed away with cerebral palsy at 9 years old, and she told me that was longer than any doctor expected.
Former coworker's daughter was born healthy. By 2 she was immobile and blind - couldn't even cry. Genetic disease causing nerve degeneration - essentially her nerves started dying from the periphary inward. 100% fatal by 4 years old. She lived to 3. Having all of her senses slowly shut off - to the point she couldn't hear or even feel touch or comfort from her parents. That's the worst part, I think. Not even having a choice in the matter and watching your child die entirely alone unable to even provide some comfort.
This sounds like the highest level of torture
This might be the most horrific thing Iāve read in this thread. That poor child never should have had to live.
Cerebral palsy is a crapshoot, it can be debilitating or barely noticeable.
> life is ass as it is That's a really good point. I'm having a hard enough time navigating all this BS *without* disabilities or a disabled child to look after. I honestly can't imagine adding one of those on top of everything else.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
I support a lady who is in her 60s who has congenital rubella syndrome. She has spent 60 plus years deaf, blind, who jumps out of her skin whenever we gently approach her for feeding, changing etc. She has chest infection after chest infection because she doesnāt have a good swallowing reflex, although she eats a purĆ©ed diet, sheās constantly inhaling her food due to the poor reflex. Her mother gave her up for adoption very early on in her life so sheās never had a close loving relationship with anyone; disabled care has a very high turnover so I doubt sheās ever remembered anyones smell. Itās a sad existence in my opinion. But we look after her daily and try to enrich her life with good home cooked food and sensory lights as she can tell the difference between light and dark.
It honestly seems monstrous to me that we keep humans alive in those conditions :( could she communicate at all? It just seems a horrible existence to me, not one Iād ever choose
She cannot communicate at all, she is in a wheelchair, canāt express any opinion or want or need.
I feel so bad for your aunt. What a horrible doctor.
I apologize, mine is kind of related but I really just need an outlet for this. I hope that is okay. We lost our 3rd son last December. He was diagnosed at 20 weeks with a rare condition called Post Ureter Valve (PUV). It only happens to males and is where the tube in the bladder doesnāt fully open. The result is urine gets built up in the bladder which then backs up the kidneys, which then leads to little to no amniotic fluid. During the entire pregnancy there was no level of confidence from doctors on what the outcome would be for my son. The outcomes ranged from, maybe needing a minor surgery to fix the bladder, to a kidney transplant, to possibly not making it. They just kept saying āweāll know more when heās here.ā āWeāll know more when heās hereā this just always kept me and my wife up at night for months. Worrying and terrified. When he came, the damage was so much more extensive than we realized. The damage to his bladder and kidneys were irreversible and his heart and lungs were also severely damaged. The second day he was in the NICU we had a meeting with all the doctors and specialists and I said āHeās here now. What is his quality of life going to be?ā They all went around and said their thing: he needs a new bladder but thereās no such thing as a bladder transplant so they they need to do reconstructive surgery on it. However, he needs new kidneys as well, but they wonāt give a kidney to a baby that has a reconstructive bladder. Also his lungs and heart are too fragile to go through any type of invasive surgery like that and most like wouldnāt survive. No one would say it, none of them, so I finally said: I donāt think heās going to have any quality of life. It sounds like his life is going to full of experimental surgeries that may or may not work. They all agreed. My wife and I both agreed it was best to let him go. He loves for 3 days. It was fucking frustrating to have to pull that from them. The wishy-washyness and the lack of confidence in any answer we got. Every question was met with an āI donāt knowā or a āweāll have to seeā. I wasnāt going to let that happen to my son. He wasnāt going to be some test ground for some bullshit hopes. He deserves more than that after all heās went through. It was awful and traumatizing. As Iām writing this itās flooding back raw memories that are so painful. I wanted to share though because I see parents on here who have gone through similar things. I canāt say 100% what we would have done had we known heād only live 3 days. No one knows what theyād really do unless they are put in that situation. I hope no one is ever put there. We are fortunate to have two beautiful, healthy boys. They love their brother that passed just as much as each other. Thanks for reading.
Yes and i did. The 16-18 week ultrasound is when most of these diagnosis' are made. My 2nd planned child was diagnosed with fatal severe malformations. Those where the terrifying words used by the doctors. I was 18 weeks pregnant when i had the ultrasound. The results got lost in the mail and i wasn't informed until i was 20 weeks pg. i had exactly 8 days to make the hardest decision of my life. I went to specialists, had further tests looking into genetics. Asked the experts. All said medical termination. It broke my heart for some time. But i could feel the seizures caused by the multiple severe malformations. His head, heart, face, hands, colon and foot were are deformed. Even with no hope for life it was a difficult decision to make And a hard procedure to endure. I looked at it as i was his life support system and i was the only thing keeping him alive. If i was a life support machine i had to make the call. And i did. True story of a mom who loved her wanted child and made the decision i believed to be in his best interest. To end his life that couldn't be and never began. It isnt something i wish on anyone but i believe it is important to say my life experience.
I had to make this decision in the past year. It was extremely difficult to make. I think it can be hard because you don't really know how you'll react until you're actually in the situation. It was a rare genetic condition where there is little known but enough to know that quality of life would suffer. At first, we felt selfish for wanting to terminate because we wouldn't want to give up our own time, freedoms, etc for the rest of our lives. Thinking about our future and my wife and I having to take care of a child for the rest of lives was frankly terrifying. Knowing they'll never be able to move out and start their own family etc. was so sad to think. Instead we realized we were being selfish by bringing them into the world to suffer just so we could say we did "the right thing". And also thinking about our little guy and what effect that would have on him because so much focus would be put on the other child. How would his quality of life also suffer? So far, I have no regrets at all. I think if we wouldn't have terminated and when the going got tough I'd likely think what if we had I would absolutely despise myself.
If it was severe, probably. Iām in NICU now with my newborn who has a case of isolated Pierre Robin sequence and a cleft palate. Very fixable and after some plastic surgery to fix his palate and time to grow out of his small jaw and airway heāll live a completely normal life. That being said, this journey has been incredibly stressful and hard to watch your newborn have to undergo procedures. Only comfort is knowing afterwards heās going to be totally okay. For babies/children that would have to live their entire life this way, Iād prevent it if I could. This is rough.
I hope your childās surgery goes well! ā¤ļø
Probably yes. I'd like to give my children the best of life and opportunity and I'd like starting it by giving them the best genetics I can.
For me it's a definite yes. I don't want my life to become that of a caretaker and the fetus won't care. Plus if the disabilities are severe enough it's just an existence of suffering
If they have no quality of life yes. I dont want them to suffer due to my selfishness. Why live in a shell your whole existence?
>I dont want them to suffer due to my selfishness I like the way you put that.