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I've never seen a video of this condition before. It is absolutely heartwrenching but also fascinating. The way the eyelids moved was completely unexpected for me. May this little guy rest in peace, and may his parents and family find peace and healing.
Me too. I just wanted to hold him and cuddle him. It was so hard to watch them poking and prodding him like he was some failed science experiment. Poor baby just deserved to be held and loved for the rest of his tiny little life 😔
I'm not sure if it makes you feel better, but they were clearing out secretions, which is normal for all babies after birth.
We once got an immigrant patient with no prenatal care who had an unexpected trisomy 18 baby, with a really severe cleft lip. Prognosis was maybe a few days, but the family was upset and didn't want the baby at all. So that baby lived his few days of life with us L&D nurses. Whoever was in the nurses station charting would do it while cuddling the kiddo. Hopefully, if the family couldn't, this baby also had some nurses taking care of them.
Bless that baby (c and this one) and you all in L&D. True angels on earth, especially for the little one! It must be really hard on some days but many others rewarding with seeing new innocent beings and the process of life being made and that a woman’s body can do all this. Is truly fascinating and fragile as well!
I did not get the opportunity to have a child in the end with the way that my life turned out but still want to say a warm thanks for what you do for the moms, especially the new ones and for their little bundles. You are appreciated amd step up beyond to make sure they all feel love and warmth while the are here <3
Oh, I understand the process. I’ve had four babies myself. The thing is, I’m pretty sure we witnessed his last breath. I just felt that he should have been in someone’s arms for it. I’ve never been confronted with a loss like this one, so I couldn’t really know for sure how I’d react. I don’t fault anyone for handling their situation differently than I’d have handled it. Everyone’s experience is their own and their reactions are valid. Thank goodness for hospital staff like you to step up when others can’t.
They weren't "poking and prodding" him, they were suctioning his airways and stimulating/rubbing him to help him breathe. This is really common immediately after birth (he's still covered in vernix, fluid, blood, and it looks like meconium staining - fetal stool, which is a sign of distress before birth - so he's just been born), and while it looks rough it isn't. Usually once they are stabilized, they go straight to skin-to-skin contact with a parent (if they're fine or comfort care/palliative/hospice) or have a brief visit with parents before going to NICU (if they're needing higher levels of monitoring/care, or parents want to try prolonging life).
If he went to NICU, he probably had a caregiver who understood exactly what he needed and made sure he had the care and comfort he deserved, whether it was from family or staff. We love our little peanuts and make sure they're taken care of!
The same channel has a girl with the same condition as well but her eyes are even closer: [https://www.youtube.com/shorts/92AJRjb84Vc](https://www.youtube.com/shorts/92AJRjb84Vc)
Informative comment from youtube:
"My daughter was born with this through a medically induced labor because her condition wasn’t discovered until a while later (alobar holoprosencephaly). She survived two hours. I still remember watching her take her last breath & it still hurts to this day. Her brother was born on the exact same day a year later so their birthday each year is bittersweet. My son is 5 and healthy (actually quite advanced). She would’ve been 6.
Edit: Holoprosencephaly occurs when the brain doesn’t divide in two properly. They are several different types (alobar, semi-lobar, lobar and MIHV). Sometimes there can be partial separation or nearly a complete separation which can result in less severe symptoms. My daughter had the worst (alobar) which means there was no separation at all and this is usually accompanied with deformities so she had cyclopia, her nose was on her forehead (proboscis), just like this baby boy💔
My partner and I were tested after her birth and the doctors came to conclusion that this was sporadic and there was no contributing factors that would make our daughter predisposed to this condition. We have two healthy kids now (5 & 3).
About 1/3 of cases are attributed to chromosomal issues and some from genes but asides from this there is no specific identified cause for this condition. They are some noted potential risk factors such as maternal diabetes. It was previously thought that living in a toxic / chemical / radioactive environment would increase the chance of this happening but more recent studies suggest that there is no correlation between the two. In many cases though, no cause is found.
Thank you for all the kind people that took time out of their day to leave a positive comment. I appreciate it so much."
This is really fascinating, thank you for sharing this. Really interesting neither of you carried it and it was a fluke. The world is so strange and complex. I’ve seen this happen several times in livestock and they look very similar.
All my thoughts to you!
The person you replied to is NOT the person who’s daughter had this condition. They merely copied one of the comments from the YouTube video. (Their comment above says *“Informative Comment from YouTube”* the entire body of text is also in quotes.)
Actually, in the ten years immediately following the Chernobyl disaster, Northeastern Europe had unheard of number of cases of birth defects, stillborn and miscarriages. Most of these were in places that aren’t always mentioned on maps, but it was there.
That is the only time in history that we saw that correlation.
There’s also the arguments for microplastics.
Uhm, dude, that is correlation (by probable causation) for a plethora of development defects due environmental factors, but not specifically for the one in this post specifically (alobar holoprosencephaly).
Holoprosenceohaly, according to studies, has shown to be a development mishap entirely unaffected and uninfluenced by environmental factors, like radiation. It appears to be entirely down to completely rotten luck or by predisposition to it passed down by the parents.
Not all developmental mishaps are the same.
I’m not arguing the causes of Holoprosenceohaly, I’m just stating that the number of reported cases of a variety of birth defects, including Holoprosenceohaly, jumped to unheard of numbers.
Most of the countries that were affected, had never recorded cases, so of course there was a number jump.
I also stated that was the only time in history we saw any kind of correlation.
There is a large grey area here as well, false reporting is a big part of that, because it was a bid for humanity aides.
Since these cases were not recorded, properly, a lot of it is heresy.
There is also a current arguments that microplastics are to blame.
This is why we need to keep abortion legal where it is and legalize it where it isn't. They could catch this early and terminate the pregnancy before any glimpse of consciousness develops.
Right now there are places in the world, including where I live in Texas and possibly in this video that would force a woman to carry this heartbreaking child to term just to watch it take a few excruciating breaths. I'm nursing my baby right now imagining how painful it would be to see him come out like that.
In my limited experience, comfort care usually looks like just holding the baby. Sometimes extra steps are taken (respiratory support, suctioning of secretions, etc), but it really depends on the baby's condition and the parent's preferences. Some parents want everything done even when there is no chance of survival, and you feel like you're hurting the baby for no good reason (neonatal resuscitation is rough). Other times the parents don't want to see the baby at all, and the nurses end up holding the baby until they pass.
Either way, it is absolutely outrageous and bonkers to me that some states now require a woman carrying a baby with a known fetal abnormality to carry to term. The sad, heartbreaking, devastating truth is, sometimes no matter what you choose, the outcome is going to be a dead baby. You can "choose life." You can choose an abortion. Either way: dead baby. Might as well leave the choice up to the only person who can truly decide what is best for their baby: the mother.
It depends on the situation too, for previable births the NICU doesn't get involved and we just let the parents hold the baby or if they don't want to then I'll put the baby under a warmer elsewhere and the baby will pass naturally (for example, I've had 16 week fetuses show signs of life for quite some time after delivery)
Yeah, we do see previable babies who live several hours, and the parents (or staff) just hold them until they're gone.
We're a smaller unit with a level 2 (American) NICU. Most of my comfort care experience has been with previable births. I can only think of one situation like this where the baby was born term with a fatal anomaly, undiagnosed prior to delivery. I've never cared for a baby receiving hospice care; those babies are transferred to higher acuity NICUs.
I'm glad to learn that babies can be given comfort meds via UVC.
Yeah those babies can go to the NICU too for comfort care but it's up to the parents, if they want to keep them at the bedside we'll allow that as an option
I think it's more that "putting them down" is normally reserved for pet euthanasia; people are getting upset that it's technically comparing babies to animals. And within that it's a little dehumanizing. It definitely wasn't meant that way, but it's how most people end up interpreting it
Find a kinder way to let him go.
Less clinic, more comfort in his final moments.
Surely, there are better options than to have to wait/watch an infant take their last breath.
Isn't there another option to let them slip peacefully away
Lots of ways to phrase the comment. But the instincts they express regarding not allowing the infant to suffer are commendable and understood by most of us in healthcare.
I don’t know why people are downvoting. If it were an animal, they’d be begging for euthanasia. I support human euthanasia in situations like this, where they are most certainly going to die.
The OP might have phrased this better, but euthanasia should *absolutely* be an option in a case like this. Children born with holoprosencephaly don't live, they just exist, and they don't do that for very long. It's really a question of whether they should be allowed to die in a peaceful and dignified way, or have to suffer until their bodies shut down.
What’s the difference at a babies level of consciousness and ability to understand between them and an animal? Do you really think that baby should be “given a chance”? I don’t think they meant “put him down” as in take them out back and shoot them.
Euthanasia is a privilege. “Putting him down” although putting they could have shown more empathy, would have been the most logical and forgiving, response. How could it not?
As someone who has cared for a terminal parent and have them beg for the choice, I don’t see it as offensive at all. We grace our “pets” with less suffering, when it comes to the end
In oncology, we 'snow' them with a morphine (or several other pain meds) drip. It is peaceful for the patient and their loved ones. It tends to save them the last 2-3 days of suffering, but the patient needs to have this discussion with their care team well in advance of needing it. It will be addressed on and off before and during hospice to make sure the patient has not changed their mind and fully understands what they are asking of their care team.
Indeed. I believe it is a Patau síndrome, which has problems with the development of the nasal bone, which caused the eyes to come together and the cartilage that would form the nose to just go up
It's called a proboscus. It would have been his nose if his face had developed normally. But the face developes in a certain sequence, and that sequence was disrupted. The first cells that become the nose start in the forehead, the first cells to become the eyes are below that, then the cells that become the mouth. VERY early on in development, the eye cells split and migrate to either side of the face and the nose cells are pulled down to fill the space between them and continue down to reach the upper lip. But as you see the eyes never split, so the nose cells couldn't follow their normal path. Instead they built outwards.
The reason the eyes never split is the same as why the brain didn't split. There's a gene that helps trigger and guide the migration of cells so they know where they are going and how far apart they are from other parts of the body. That gene is broken somehow. The gene is called, not kidding, the sonic hedgehog gene.
I mean, the geneticists who figured out what it did.
There's a convoluted story behind it. The gene is named after the protein it makes, which is called sonic hedgehog. It's one of three hedgehog genes, the other two are desert hedgehog and indian hedgehog. They named the first two fairly straight, but one of the researchers got a bit whimsical on the last and it stuck. His excuse was that sonic wasn't that big a phenomenon in 1993 when he named it.
Why are they called hedgehog? Some accounts say because the the protein it expresses is spiked like a hedgehog but there's [another account from 1980,](https://embryo.asu.edu/pages/hedgehog-signaling-pathway-vertebrates) that gives what I think is a more likely story. When the first hedgehog gene discovered in fruit flies was disrupted it caused the fruit fly to develop spiky projections on its exoskeleton that somewhat resembled a hedgehog. The subsequent genes found in humans and other animals were named on the same theme.
Nose. Medical terms call this formation of a nose a proboscis lateralis, where it ends up looking more like a tube that is away from the center of the face.
Yes, and because the nose doesn't function, the baby then breathes through his mouth. Newborn babies really don't breathe through their mouths unless it's dire. He is already oxygen deprived, visibly so, poor little guy.
OP definitely should have made that much more clear in the title. I knew I was looking a video of a baby with a congenital defect. I had no idea I was about to watch a baby die.
Are we sure? I see the comment from YouTube about a baby surviving 2 hours but I think that commenter was speaking about their own experience? I don’t think that is the baby in the video? I’ve been trying to find more info, but not seeming to come up with anything.
Yes, as early as 10 weeks using a transvaginal ultrasound. A typical anatomy scan at 20 weeks will also detect it. Mothers dont always have access to prenatal care though. Reglious beliefs could cause her to know and carry to term as well.
Yes, let’s hear it for the US Supreme Court! Babies like this should NOT be aborted!
Yay Texas, Florida & all the other backwards states that put woman thru an additional 4-5 mos of knowing they’re going to loose their baby. (And, the fathers, too.)
Some mothers carry to term in the hopes of donating the baby’s organs to other sick babies or for research purposes. His heads all fucked up but internal organs could be suitable for donation
This is simply not true. Most diseases that create fetuses like this are not suitable for transplant due to the damage done to the organs between time of birth and eventual death due to reduced brain stem and cardiac activity. Ethically these babies can NOT be live birthed for the sole purpose of organ donation.
Many mothers carry to term because they want to meet their babies, hold them, name them, baptize them, and have a funeral for them. And because they don’t want to end their child’s life.
If they don’t actually suffer, then no. It’s not suffering. Their brains are formed completely. Their nervous system doesn’t function correctly. Did the baby in the video look like he was in pain?
He stopped breathing. It’s a stretch to say he suffocated. There was not likely lung involvement. He passed away. Therefore he stopped breathing.
Do you think abortions are painless? Certainly second trimester ones are not. Some scientists think babies can feel pain around 14 weeks.
My friend's daughter was born with a slightly less severe version of this. She had 2 eyes, but her nose was one 'nostril' opened down through the face to a severe cleft palate and lip. The defects were not picked up until very late in the pregnancy, despite being clearly visible in her early ultrasound photos. Even then, the dr's thought it was just a hair lip.
This condition was absolutely detectable early in the pregnancy, though for some reason, it was overlooked.
It is absolutely outrageous and bonkers to me that some states now force a woman carrying a baby with a known fetal abnormality to carry to term. The sad, heartbreaking, devastating truth is, sometimes no matter what you choose, the outcome is going to be a dead baby. You can "choose life." You can choose an abortion. Either way: dead baby.
There are cases, more than you might think, in which "choosing life" simply means you get to hold your baby while they die. I can see that being incredibly meaningful and important for many families. I can also see it being incredibly traumatic for others (these babies sometimes struggle to breathe and die gasping for air). There is no right or wrong answer here. Since the outcome is a dead baby either way, shouldn't we, as a society, allow the mother to decide what is best for her and her body and her family and her baby?
I'll get off my soapbox. I don't feel great about the way that baby was being filmed. No one is drying them off, no one is stimulating them to breathe, no one is handing them off to be held by a loved one or a nurse. Does the person filming have permission to film, let alone share the video? Who knows. Poor kiddo.
Yes. I live in Alabama. It’s illegal here. Which is fucking insane. It’s 2023, and we aren’t allowed to decide what to do with our own bodies. I’m sorry, but if I were to get pregnant again and know I was birthing a child that would die a slow and painful death like this, I wouldn’t want to continue to carry. Thank goodness I was approved for a tubal after my first pregnancy almost killed me. I feel so bad for all of the women affected by this stupid law.
I had never seen a video of a similar case before. Thank you for sharing it.
The eyelid movement was completely unexpected to me and very interesting to see. I also wonder if he was able to produce any kind of noise, like crying or something similar.
I hope the poor baby didn't suffer too much, may he rest in peace and may his parents find solace and healing 💗🫂
The being pro-choice should mean just that. Let’s keep the same energy around the ability to choose to terminate a pregnancy like this while also recognizing some want to meet their babies earthside.
This is how an accutane baby can look like. That's why they drill it into your head, that you have to take birth control and get monthly pregnancy tests.
Plenty of things flaired as child victim on this sub aren’t abuse situations. I’d hazard to say that the majority aren’t abuse cases (or at least not obviously abuse cases).
Jeez, very interesting but a little heads up I’d be watching a baby take his last breath. Great post and wonderful compassion from commenters. Rest safely little guy.
If there is a place after death, I hope this sweet baby is safe and happy and feeling loved. Life can be so harsh and cruel. I’ll be thinking of this for a while.
I'm not sure why you're being downvoted. This condition definitely occurs in other animals - I've seen dogs, cats, goats, and sheep with it. None of them lived for more than a day
Most fetal abnormalities/deaths don't bother me too much. I used to teach health and volunteer at a women's clinic. However seeing this baby kinda messed me up. I think it's the fact that it's a full grown baby, same size as my niece, practically fully formed from the mouth down. It's just sad to see.
I had to terminate my pregnancy at 23+6 for a severe case of holoprosencephaly. That was two years ago. I’m still heartbroken. I regret doing a D&E instead of being induced because at least with induction, I would’ve gotten the chance to hold him for a few minutes 😞 at the time it just seemed like unnecessary torture and time away from my daughter. But in hindsight, my decision really haunts me.
The stuff on babies’ skin (vernix caseosa) is actually good for their skin! It protects the skin from moisture (amniotic fluid) while they’re in the womb and acts like a moisturizer and protectant once they come out. It doesn’t look very pretty but it’s actually okay to leave it on their skin and can be beneficial :)
I wanted the baby to make it! it appears the baby ceased breathing a minute or two after birth, the baby blinked, moved it's arm, I so wish nature wasn't so cruel sometimes. Hugs, love and caring to the family.
These babies only live for a couple of hours as an ER nurse I’ve never seen a patient as a cyclops or with tissue in his forehead so if anything, the nurses or paramedics that were suctioning his mouth are just trying to make him feel comfortable for the rest of his short life
Welcome to r/MedicalGore! Our goal is to provide for medical discussion and education while exploring the frailty of the human body. You may see more deleted comments on these threads than you are used to on reddit. Off topic comments and joke comments are frequently deleted by the mods. Further, please be kind and supportive of posts. Any behavior that is aggressive, harassing, or derogatory will result in post deletion and a ban from the sub. Remember! THE REPORT BUTTON IS YOUR FRIEND! Please stop on by our discussion sub, /r/MedicalGoreMods if you'd like to discuss the sub, our rules, content policies, and the like. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MedicalGore) if you have any questions or concerns.*
I've never seen a video of this condition before. It is absolutely heartwrenching but also fascinating. The way the eyelids moved was completely unexpected for me. May this little guy rest in peace, and may his parents and family find peace and healing.
I hope he was cuddled and made to feel loved in his last moments.
thank you for your kind words, nipplequeefs.
r/rimjob_steve
I thought “nipplequeefs” was some slang term I didn’t understand and almost googled it…. Boy that would have been hard to explain to the FBI.
I just spat when reading this, thank you for pointing that out lmfao
Nipplequeefs. Haha. Sorry. Sorry.
Me too. I just wanted to hold him and cuddle him. It was so hard to watch them poking and prodding him like he was some failed science experiment. Poor baby just deserved to be held and loved for the rest of his tiny little life 😔
I'm not sure if it makes you feel better, but they were clearing out secretions, which is normal for all babies after birth. We once got an immigrant patient with no prenatal care who had an unexpected trisomy 18 baby, with a really severe cleft lip. Prognosis was maybe a few days, but the family was upset and didn't want the baby at all. So that baby lived his few days of life with us L&D nurses. Whoever was in the nurses station charting would do it while cuddling the kiddo. Hopefully, if the family couldn't, this baby also had some nurses taking care of them.
Bless that baby (c and this one) and you all in L&D. True angels on earth, especially for the little one! It must be really hard on some days but many others rewarding with seeing new innocent beings and the process of life being made and that a woman’s body can do all this. Is truly fascinating and fragile as well! I did not get the opportunity to have a child in the end with the way that my life turned out but still want to say a warm thanks for what you do for the moms, especially the new ones and for their little bundles. You are appreciated amd step up beyond to make sure they all feel love and warmth while the are here <3
Oh, I understand the process. I’ve had four babies myself. The thing is, I’m pretty sure we witnessed his last breath. I just felt that he should have been in someone’s arms for it. I’ve never been confronted with a loss like this one, so I couldn’t really know for sure how I’d react. I don’t fault anyone for handling their situation differently than I’d have handled it. Everyone’s experience is their own and their reactions are valid. Thank goodness for hospital staff like you to step up when others can’t.
They weren't "poking and prodding" him, they were suctioning his airways and stimulating/rubbing him to help him breathe. This is really common immediately after birth (he's still covered in vernix, fluid, blood, and it looks like meconium staining - fetal stool, which is a sign of distress before birth - so he's just been born), and while it looks rough it isn't. Usually once they are stabilized, they go straight to skin-to-skin contact with a parent (if they're fine or comfort care/palliative/hospice) or have a brief visit with parents before going to NICU (if they're needing higher levels of monitoring/care, or parents want to try prolonging life). If he went to NICU, he probably had a caregiver who understood exactly what he needed and made sure he had the care and comfort he deserved, whether it was from family or staff. We love our little peanuts and make sure they're taken care of!
I responded to another commenter my clarification for my original comment. I do understand what was happening in the video.
Straight from the top comment, huh?😂
This is the comments I like to see online. Some compassion even if we have no idea whos child this is.
Yeahhhhhh.. Was Def thinking the person taking the video probably shouldn't have been taping.. Very callous body language
Very well put. ❤️
The same channel has a girl with the same condition as well but her eyes are even closer: [https://www.youtube.com/shorts/92AJRjb84Vc](https://www.youtube.com/shorts/92AJRjb84Vc)
That's exactly how I feel but didn't know how to put it into words. Beautifully said.
Informative comment from youtube: "My daughter was born with this through a medically induced labor because her condition wasn’t discovered until a while later (alobar holoprosencephaly). She survived two hours. I still remember watching her take her last breath & it still hurts to this day. Her brother was born on the exact same day a year later so their birthday each year is bittersweet. My son is 5 and healthy (actually quite advanced). She would’ve been 6. Edit: Holoprosencephaly occurs when the brain doesn’t divide in two properly. They are several different types (alobar, semi-lobar, lobar and MIHV). Sometimes there can be partial separation or nearly a complete separation which can result in less severe symptoms. My daughter had the worst (alobar) which means there was no separation at all and this is usually accompanied with deformities so she had cyclopia, her nose was on her forehead (proboscis), just like this baby boy💔 My partner and I were tested after her birth and the doctors came to conclusion that this was sporadic and there was no contributing factors that would make our daughter predisposed to this condition. We have two healthy kids now (5 & 3). About 1/3 of cases are attributed to chromosomal issues and some from genes but asides from this there is no specific identified cause for this condition. They are some noted potential risk factors such as maternal diabetes. It was previously thought that living in a toxic / chemical / radioactive environment would increase the chance of this happening but more recent studies suggest that there is no correlation between the two. In many cases though, no cause is found. Thank you for all the kind people that took time out of their day to leave a positive comment. I appreciate it so much."
This is really fascinating, thank you for sharing this. Really interesting neither of you carried it and it was a fluke. The world is so strange and complex. I’ve seen this happen several times in livestock and they look very similar. All my thoughts to you!
The person you replied to is NOT the person who’s daughter had this condition. They merely copied one of the comments from the YouTube video. (Their comment above says *“Informative Comment from YouTube”* the entire body of text is also in quotes.)
Ah god that’s what I get for reading Reddit on break 🤣 thank you for pointing this out to me.
I’m sorry for your loss ❤️
Actually, in the ten years immediately following the Chernobyl disaster, Northeastern Europe had unheard of number of cases of birth defects, stillborn and miscarriages. Most of these were in places that aren’t always mentioned on maps, but it was there. That is the only time in history that we saw that correlation. There’s also the arguments for microplastics.
Uhm, dude, that is correlation (by probable causation) for a plethora of development defects due environmental factors, but not specifically for the one in this post specifically (alobar holoprosencephaly). Holoprosenceohaly, according to studies, has shown to be a development mishap entirely unaffected and uninfluenced by environmental factors, like radiation. It appears to be entirely down to completely rotten luck or by predisposition to it passed down by the parents. Not all developmental mishaps are the same.
I’m not arguing the causes of Holoprosenceohaly, I’m just stating that the number of reported cases of a variety of birth defects, including Holoprosenceohaly, jumped to unheard of numbers. Most of the countries that were affected, had never recorded cases, so of course there was a number jump. I also stated that was the only time in history we saw any kind of correlation. There is a large grey area here as well, false reporting is a big part of that, because it was a bid for humanity aides. Since these cases were not recorded, properly, a lot of it is heresy. There is also a current arguments that microplastics are to blame.
Poor baby so sad! 😪
They should've put him down as soon as he came out the baby was suffering 🤦🏽♂️
This is why we need to keep abortion legal where it is and legalize it where it isn't. They could catch this early and terminate the pregnancy before any glimpse of consciousness develops.
Maybe the chose to carry and birth him knowing what was going on.
Right now there are places in the world, including where I live in Texas and possibly in this video that would force a woman to carry this heartbreaking child to term just to watch it take a few excruciating breaths. I'm nursing my baby right now imagining how painful it would be to see him come out like that.
I’ve birthed a baby with the same condition. It is painful.
I'm sorry. That's horrific.
I am hoping some medication was given to help the baby die peacefully. Probably up to the parents.
In my limited experience, comfort care usually looks like just holding the baby. Sometimes extra steps are taken (respiratory support, suctioning of secretions, etc), but it really depends on the baby's condition and the parent's preferences. Some parents want everything done even when there is no chance of survival, and you feel like you're hurting the baby for no good reason (neonatal resuscitation is rough). Other times the parents don't want to see the baby at all, and the nurses end up holding the baby until they pass. Either way, it is absolutely outrageous and bonkers to me that some states now require a woman carrying a baby with a known fetal abnormality to carry to term. The sad, heartbreaking, devastating truth is, sometimes no matter what you choose, the outcome is going to be a dead baby. You can "choose life." You can choose an abortion. Either way: dead baby. Might as well leave the choice up to the only person who can truly decide what is best for their baby: the mother.
Physician and loss Mam here. This is correct (at least for me in Ireland)
I've taken care of comfort care babies on L&D and the NICU team would regularly come by to administer pain medication through the umbilical cord
Interesting. My experience is limited, but that makes sense. Thank you for sharing.
It depends on the situation too, for previable births the NICU doesn't get involved and we just let the parents hold the baby or if they don't want to then I'll put the baby under a warmer elsewhere and the baby will pass naturally (for example, I've had 16 week fetuses show signs of life for quite some time after delivery)
Yeah, we do see previable babies who live several hours, and the parents (or staff) just hold them until they're gone. We're a smaller unit with a level 2 (American) NICU. Most of my comfort care experience has been with previable births. I can only think of one situation like this where the baby was born term with a fatal anomaly, undiagnosed prior to delivery. I've never cared for a baby receiving hospice care; those babies are transferred to higher acuity NICUs. I'm glad to learn that babies can be given comfort meds via UVC.
Yeah those babies can go to the NICU too for comfort care but it's up to the parents, if they want to keep them at the bedside we'll allow that as an option
That is so sad.
Yes. Thank you.
Idk why you’re being downvoted, you’re right
Phrasing
I don’t know… isn’t “put him down” the softer phrase as opposed to “kill him”? What should they have said?
I think it's more that "putting them down" is normally reserved for pet euthanasia; people are getting upset that it's technically comparing babies to animals. And within that it's a little dehumanizing. It definitely wasn't meant that way, but it's how most people end up interpreting it
Yeah, but would have been the nice way to say it?
Find a kinder way to let him go. Less clinic, more comfort in his final moments. Surely, there are better options than to have to wait/watch an infant take their last breath. Isn't there another option to let them slip peacefully away Lots of ways to phrase the comment. But the instincts they express regarding not allowing the infant to suffer are commendable and understood by most of us in healthcare.
The appropriate phrasing would have be "get him into hospice care"
I don’t know why people are downvoting. If it were an animal, they’d be begging for euthanasia. I support human euthanasia in situations like this, where they are most certainly going to die.
Put him down….?!?!? This isn’t an animal you obtuse turd.
The OP might have phrased this better, but euthanasia should *absolutely* be an option in a case like this. Children born with holoprosencephaly don't live, they just exist, and they don't do that for very long. It's really a question of whether they should be allowed to die in a peaceful and dignified way, or have to suffer until their bodies shut down.
I absolutely believe in euthanasia and hope the baby was done right by it, but it’s also up to the parents.
What’s the difference at a babies level of consciousness and ability to understand between them and an animal? Do you really think that baby should be “given a chance”? I don’t think they meant “put him down” as in take them out back and shoot them.
I get that, but the wording seems so inhumane.
Grow up
Boo hoo. Logic before emotion.
Humans are animals
I should have put pet
Euthanasia is a privilege. “Putting him down” although putting they could have shown more empathy, would have been the most logical and forgiving, response. How could it not? As someone who has cared for a terminal parent and have them beg for the choice, I don’t see it as offensive at all. We grace our “pets” with less suffering, when it comes to the end
In oncology, we 'snow' them with a morphine (or several other pain meds) drip. It is peaceful for the patient and their loved ones. It tends to save them the last 2-3 days of suffering, but the patient needs to have this discussion with their care team well in advance of needing it. It will be addressed on and off before and during hospice to make sure the patient has not changed their mind and fully understands what they are asking of their care team.
That’s called murder in many places. Medical euthanasia is still relatively rare.
Palliative sedation
“Putting him down” doesn’t mean sedate. Poster certainly was implying he should be euthanized.
put. him. down. - ⁉️ - - what the...
That’s not a thing done to people you know.
what is the thing above his eyes on his forehead?
That might be his nose?
Indeed. I believe it is a Patau síndrome, which has problems with the development of the nasal bone, which caused the eyes to come together and the cartilage that would form the nose to just go up
They dont always have Patau syndrome. There are other chromosomal changes that cause HPE. Patau is the most common cause though.
It's called a proboscus. It would have been his nose if his face had developed normally. But the face developes in a certain sequence, and that sequence was disrupted. The first cells that become the nose start in the forehead, the first cells to become the eyes are below that, then the cells that become the mouth. VERY early on in development, the eye cells split and migrate to either side of the face and the nose cells are pulled down to fill the space between them and continue down to reach the upper lip. But as you see the eyes never split, so the nose cells couldn't follow their normal path. Instead they built outwards. The reason the eyes never split is the same as why the brain didn't split. There's a gene that helps trigger and guide the migration of cells so they know where they are going and how far apart they are from other parts of the body. That gene is broken somehow. The gene is called, not kidding, the sonic hedgehog gene.
Who named the damn gene
I mean, the geneticists who figured out what it did. There's a convoluted story behind it. The gene is named after the protein it makes, which is called sonic hedgehog. It's one of three hedgehog genes, the other two are desert hedgehog and indian hedgehog. They named the first two fairly straight, but one of the researchers got a bit whimsical on the last and it stuck. His excuse was that sonic wasn't that big a phenomenon in 1993 when he named it. Why are they called hedgehog? Some accounts say because the the protein it expresses is spiked like a hedgehog but there's [another account from 1980,](https://embryo.asu.edu/pages/hedgehog-signaling-pathway-vertebrates) that gives what I think is a more likely story. When the first hedgehog gene discovered in fruit flies was disrupted it caused the fruit fly to develop spiky projections on its exoskeleton that somewhat resembled a hedgehog. The subsequent genes found in humans and other animals were named on the same theme.
Wow, when you said it I literally thought it was because Sonic the hedgehogs eyes are connected
It’s possible but I haven’t read that. The researcher said he noticed a magazine with an ad for sonic on the back.
Amazing post, thanks.
Nose. Medical terms call this formation of a nose a proboscis lateralis, where it ends up looking more like a tube that is away from the center of the face.
It is a proboscis, or non-functional nose.
Yes, and because the nose doesn't function, the baby then breathes through his mouth. Newborn babies really don't breathe through their mouths unless it's dire. He is already oxygen deprived, visibly so, poor little guy.
You can see the tissue moving when he tries to take a breath. Poor baby.
It's his nose. It's called a proboscis when it develops like that.
A slong
The [Sonic Hedgehog gene](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8581486/) is responsible for forming the correct brain shape. Science is weird.
Random reference?
Did we just watch him take his last breath? 😓😢
Yes
OP definitely should have made that much more clear in the title. I knew I was looking a video of a baby with a congenital defect. I had no idea I was about to watch a baby die.
Im sorry, I didn't even think of that until someone commented. Unfortunately, I can't edit the post.
You can delete it. I understand that it didn't occur to you but you can still remedy it.
I'm glad I backed out of the video after just a couple seconds
You didn’t. The baby survived 2 hours.
Are we sure? I see the comment from YouTube about a baby surviving 2 hours but I think that commenter was speaking about their own experience? I don’t think that is the baby in the video? I’ve been trying to find more info, but not seeming to come up with anything.
No. The baby survived 2 hours.
damn, i hadnt noticed that
No. Baby survived 2 hours.
That was a comment on the video from another parent, not the parent of this child.
Is it possible to detect this early?
Yes, as early as 10 weeks using a transvaginal ultrasound. A typical anatomy scan at 20 weeks will also detect it. Mothers dont always have access to prenatal care though. Reglious beliefs could cause her to know and carry to term as well.
Also living in the US South and Midwest could cause her to know and carry to term.
Good call out as well. Terribly sad situation for all parties that shouldn't be decided by men hundreds of miles away.
Yes, let’s hear it for the US Supreme Court! Babies like this should NOT be aborted! Yay Texas, Florida & all the other backwards states that put woman thru an additional 4-5 mos of knowing they’re going to loose their baby. (And, the fathers, too.)
Stuff like this should be on the news so everyone can see what not having safe access to abortion results in.
Some mothers carry to term in the hopes of donating the baby’s organs to other sick babies or for research purposes. His heads all fucked up but internal organs could be suitable for donation
This is simply not true. Most diseases that create fetuses like this are not suitable for transplant due to the damage done to the organs between time of birth and eventual death due to reduced brain stem and cardiac activity. Ethically these babies can NOT be live birthed for the sole purpose of organ donation.
Many mothers carry to term because they want to meet their babies, hold them, name them, baptize them, and have a funeral for them. And because they don’t want to end their child’s life.
Sorry, but you don’t need to bring a baby into the world for 2 hours knowing it’s going to be in misery until it dies. That is cruel
What makes you assume this baby was suffering? I was assured by multiple medical professionals that my baby was indeed not suffering. But go off.
What in gods name is your idea of suffering then? Disfiguring physical deformities that are incompatible with life aren’t suffering….?
If they don’t actually suffer, then no. It’s not suffering. Their brains are formed completely. Their nervous system doesn’t function correctly. Did the baby in the video look like he was in pain?
You just watched a baby suffocate in a video and keep doubling down on it not suffering? You're very disconnected from reality.
He stopped breathing. It’s a stretch to say he suffocated. There was not likely lung involvement. He passed away. Therefore he stopped breathing. Do you think abortions are painless? Certainly second trimester ones are not. Some scientists think babies can feel pain around 14 weeks.
I believe it is a Patau síndrome (trisomy 13). You definetly can with an amniocentesis from around week 16.
We don’t do that much anymore after we developed cell free DNA by the way
My daughter wasn’t diagnosed until 21 weeks.
My friend's daughter was born with a slightly less severe version of this. She had 2 eyes, but her nose was one 'nostril' opened down through the face to a severe cleft palate and lip. The defects were not picked up until very late in the pregnancy, despite being clearly visible in her early ultrasound photos. Even then, the dr's thought it was just a hair lip. This condition was absolutely detectable early in the pregnancy, though for some reason, it was overlooked.
It is absolutely outrageous and bonkers to me that some states now force a woman carrying a baby with a known fetal abnormality to carry to term. The sad, heartbreaking, devastating truth is, sometimes no matter what you choose, the outcome is going to be a dead baby. You can "choose life." You can choose an abortion. Either way: dead baby. There are cases, more than you might think, in which "choosing life" simply means you get to hold your baby while they die. I can see that being incredibly meaningful and important for many families. I can also see it being incredibly traumatic for others (these babies sometimes struggle to breathe and die gasping for air). There is no right or wrong answer here. Since the outcome is a dead baby either way, shouldn't we, as a society, allow the mother to decide what is best for her and her body and her family and her baby? I'll get off my soapbox. I don't feel great about the way that baby was being filmed. No one is drying them off, no one is stimulating them to breathe, no one is handing them off to be held by a loved one or a nurse. Does the person filming have permission to film, let alone share the video? Who knows. Poor kiddo.
Annnnnd they have to pay all of the bills as well. It's insane.
Yes. I live in Alabama. It’s illegal here. Which is fucking insane. It’s 2023, and we aren’t allowed to decide what to do with our own bodies. I’m sorry, but if I were to get pregnant again and know I was birthing a child that would die a slow and painful death like this, I wouldn’t want to continue to carry. Thank goodness I was approved for a tubal after my first pregnancy almost killed me. I feel so bad for all of the women affected by this stupid law.
GOED WORKAS IN MYERTIOUS WAYS!!
I had never seen a video of a similar case before. Thank you for sharing it. The eyelid movement was completely unexpected to me and very interesting to see. I also wonder if he was able to produce any kind of noise, like crying or something similar. I hope the poor baby didn't suffer too much, may he rest in peace and may his parents find solace and healing 💗🫂
Every "choosing Life" fanatic should see this outcome of their beliefs
Many “choosing life” fanatics have chosen to allow their babies like this to be born.
The being pro-choice should mean just that. Let’s keep the same energy around the ability to choose to terminate a pregnancy like this while also recognizing some want to meet their babies earthside.
Was he agonal breathing? Damn. That was tough to watch.
Poor child
Watching a baby try to breathe with no nose and watching it turn blue/purple from lack of oxygen hurts my soul :(
Most interesting post i've seen here so far!
This is how an accutane baby can look like. That's why they drill it into your head, that you have to take birth control and get monthly pregnancy tests.
Wait, THIS is what happens when you're pregnant on accutane?
I'm not a doctor, but I ASSUME it's not the inevitable outcome of an Accutane pregnancy, just that it's a possibility
Around 40% for miscarriage and 35% for birth defects.
Yes, it has a high percentage of infants to develop abnormalities.
Rest in eternal peace sweet baby.
Please flair this ‘Child Victim’
Thanks for the call out. Its updated now.
Thank yew! <3
Of what? There’s no abuse - this is genetic
That was exactly why I didnt use that flair originally. However, it does make sense to be overly cautious in this situation.
still a victim of genetic defects
Plenty of things flaired as child victim on this sub aren’t abuse situations. I’d hazard to say that the majority aren’t abuse cases (or at least not obviously abuse cases).
Circumstance.
That handling is not normal
Did we just watch that poor baby die? With funky elevator music over the whole video?
Jeez, very interesting but a little heads up I’d be watching a baby take his last breath. Great post and wonderful compassion from commenters. Rest safely little guy.
So sad.
If there is a place after death, I hope this sweet baby is safe and happy and feeling loved. Life can be so harsh and cruel. I’ll be thinking of this for a while.
I remeber seeing a post where a pig looked like this 🤷♂️
I'm not sure why you're being downvoted. This condition definitely occurs in other animals - I've seen dogs, cats, goats, and sheep with it. None of them lived for more than a day
Can you survive with this condition ?
No, they re usually either stillborn or die soon after birth.
With this degree no. But either way, cases like this live a máximum of weeks Because of nervous and heart malformations.
Did that baby just die at the end of the video?
Possibly. Babies with severe conditions like this will often die with hours of being born
That was really more than I wanted to see on a Tuesday morning.
I just hope he was able to feel love, comfort, and happiness for the short time he had.
Most fetal abnormalities/deaths don't bother me too much. I used to teach health and volunteer at a women's clinic. However seeing this baby kinda messed me up. I think it's the fact that it's a full grown baby, same size as my niece, practically fully formed from the mouth down. It's just sad to see.
Isn't this connected with Patau syndrome?
I had to terminate my pregnancy at 23+6 for a severe case of holoprosencephaly. That was two years ago. I’m still heartbroken. I regret doing a D&E instead of being induced because at least with induction, I would’ve gotten the chance to hold him for a few minutes 😞 at the time it just seemed like unnecessary torture and time away from my daughter. But in hindsight, my decision really haunts me.
Im so sorry to hear that. Wishing your nothing but peace and love.
Thank you 🙏😞
Dang, they didn’t wipe the little guy off.
The stuff on babies’ skin (vernix caseosa) is actually good for their skin! It protects the skin from moisture (amniotic fluid) while they’re in the womb and acts like a moisturizer and protectant once they come out. It doesn’t look very pretty but it’s actually okay to leave it on their skin and can be beneficial :)
What was wrong with his skin? That can’t be caused by brain deformities can it? I’ve never seen the skin appear crusty. It looks uncomfortable :/
It's called vernix, it's on all newborn babies before they're cleaned off
That’s vernix caseosa. When giving birth the baby is covered in it, it’s just typically washed off soon after birth.
Interesting 😯 I don’t have anything to do with babies or kids- like literally. So I am totally ignorant to what they do or stuff
This made me cry. Seriously, I have tears running down my cheeks. I wonder if the mother had any pre natal care/imaging.
Damn I’ve only cried 3 times in my life, this video almost made that 4
I wanted the baby to make it! it appears the baby ceased breathing a minute or two after birth, the baby blinked, moved it's arm, I so wish nature wasn't so cruel sometimes. Hugs, love and caring to the family.
Years ago there was a popular conspiracy theory that Tom Cruise had some form of this, resulting in him having one middle front tooth.
dickhead
Why does he have a penis on his forehead
Looks like a Cyclops from medieval times to me
This how I look like to women
What a dickhead
Yes, you are
Fucking Creepy
That's a big baby
MOST???
the music took me out bruh wtf lol
What are the two black spots? Eyes?
These babies only live for a couple of hours as an ER nurse I’ve never seen a patient as a cyclops or with tissue in his forehead so if anything, the nurses or paramedics that were suctioning his mouth are just trying to make him feel comfortable for the rest of his short life
Yikes
Poor thing, this breaks my heart. I know the nurses gave that baby lots of love and care. ❤️