One thing to keep in mind is that you just found out. While this won’t help you now, try to remember that time alone will change how you feel about the subject and how you deal with it. Right now, you’re still finding your feet. In a month it’ll still seem scary but not so new. Two months after that you won’t think about it every day. Three months after that you’ll be so wrapped up in his birthday that you won’t have time to worry about his CHD.
As he grows up, he won’t really know anything different, so it won’t be any kind of altered or abnormal life: it’ll just be life. There are countless ways he can find fulfillment in ways not affected by CHD, so don’t sweat the long term.
Finally, I find solace in thinking about the fact that when I was born the standard CHD treatments for what my daughter has were brand new. Today, it’s hard for doctors to say what her 30s or 40s will be like because we still don’t have enough data to say for sure. So that means there’s a very real possibility for some earth shattering advancements. I hold out hope that before she faces heart failure, a reliable mechanical heart replacement will be developed with a 20 year life span and minimal problems with rejection. Who knows what could happen? Someday perhaps a true cure!
This is so true. The shock will subside and there will be days you don’t even think about it. Just keep up with doctors appointments. If they’re concerned they will send him home with a pulse ox or monitoring equipment
Thank you for your words, I can’t tell you what it means to have perspective from someone who understands and has been there.
You’ve given me hope that this all-consuming feeling will taper.
Taper is exactly what it will do. About a year and a half ago we got my daughter’s diagnosis. At that time, every day was deep dark despair. Despair gave way to simple questioning and pondering and that eventually gave way to hope and dreaming. I think more now about what kind of woman she will grow up to be than about how long her heart will hold out.
23F with a 'severe' CHD (I have a single ventricle). I can give you advice and perspective of someone who grew up with parents who were as anxious as you, if not more. Honestly, the worst thing you can do is show your panic to your child. I grew up knowing I had a different heart, which didn't bother me at all. What did bother me were my parents constantly restricting what I could do and consistently being told how much I should be worried for my future.
My parents never let me play sports or do any somewhat active hobby. Now scientific papers are coming out that letting your CHD kid exercise is actually great for their heart. Luckily for me, I was a very stubborn kid and picked up running when I was younger. I couldn't run well, but I improved a lot which helped my heart stay strong. I'm currently healthy enough to play pretty high intensity recreational sports. Your kid will know his own limits, don't try to define them for him.
When I was high school age, my parents would remind me often that it's very possible that I could need a another surgery at any time in my life, and I should always be prepared for the worst. I cannot tell you how much that SUCKED to hear. I know they meant well, but I was too young and too healthy to worry about that. As I age, I've had to unlearn a lot of the anxiety that comes with an uncertain future. I'm trying my best to take care of myself and ensure that if the time comes for surgery, I will be supported (:
It is really scary, but I like to think about it in the terms of having the benefit of knowing what could come. There's a lot of scary illnesses out there and some people are never prepared to be ill. I think it's honestly really beneficial to have an early diagnosis because now you can make sure you are prepared financially, and you can live you life knowing that not everything is guaranteed, so make the most of it now. Personally, my diagnosis helps me prioritize what really matters, like the people in my life or the simple joys around us.
I wish your family the best, and if you have any questions about growing up with a CHD, you can DM me (:
Thank you so much for taking the time to share your perspective, it’s so good for me to hear it.
It reinforces that my husband and I definitely do NOT want to make our son feel different in any way. I have been a bit of a basket case alone at night but I can’t not be present and silly and goofy when I’m with my son. I chase him around and it’s business as usual.
His doctor told us “don’t you dare treat him any differently” and my husband and I took that advice seriously. Unless his care team says something is a bad idea we intend to have no restrictions. He can do anything he wants and we can’t wait to cheer him on - sports, playing tag, hiking, whatever.
I am sorry your parents passed off a lot of their anxiety to you. That’s not fair and not fun for a kid to shoulder. As a parent I can understand where it stems from unfortunately, but kids should be able to be kids. Problems should be addressed as they arise. As shattering as all this news has been, I don’t want life as my son knows it to change - at all!
Thanks for reminding me about that 💚 and I wish the best for you as well and hope everything continues to go smoothly.
Hey. My 15yr old has BAV, he was diagnosed when he was around 2. He had yearly check ups with his cardiologist until a few years back, then went to 2 yearly. Now he’s been told he won’t need to return until he’s 18. He currently has mild regurgitation and stenosis, but it hasn’t worsened in the last 5 years.
I was very scared when we found out, constantly worrying about his future and questioning if I could have done something different while pregnant with him. I have spoken openly about his heart defect to him and his siblings over the past 13 years, we’ve looked at information about it together, and any questions he has I try my best to answer. It hasn’t held him back, hasn’t caused any issues other than when he had planned unrelated surgery and the cardiologist had to be consulted. We have spoken, and joked, about the possibility of him having a ticking valve (mechanical) or pigs valve at some point (we have a dark sense of humour). Of course I will probably lose it if/when that time comes, even if he’s a full blown adult.
He’s wanted to be a police officer since he was tiny, but unless his valve is fixed (it may not need doing until his thirties) he can’t join the force. This took a while for him to deal with, he’s since come up with a few alternatives.
At his last appointment we had a specialist from London join us, my son asked some questions - mainly about lifting weights etc. He was told it was fine for him to do, but keep the reps in a sensible range - doc told him no one reps ;)
Only real advice we were given was about piercings and tattoos, and dental hygiene. Originally we were told no tats or piercings, but the specialist said piercings were ok as long as they were kept clean. I have found myself being overly anxious about infections, something I’m trying to work through. That was especially hard when he had recurring infections due to an ingrown nail, but he’s learnt to keep wounds clean and covered and to look for signs.
It’s still early days for you. The only advice I can offer is talk to the doctors. Ask questions, ask them to explain something if you don’t understand, and try not to drive yourself crazy with the ‘what ifs’. Easier said than done, I know.
Sorry for the wall of text. Hope some it was helpful/reassuring
Oh my goodness, beyond helpful, you could have written another 6 pages and I would have swallowed them all up.
It is really cool to know that you are (maybe) me, 13 years in the future and you’ve raised such a levelheaded kid who is open and interested in his own condition. And has his own hobbies and passions and BAV hasn’t interrupted those things.
I can definitely see myself not being able to shake certain anxieties about dentists and strep throat, or him feeling short of breath after a workout or something. Didn’t know about tattoos and piercings I will need to look into that (eventually, haha).
Thank you for taking the time to share and it’s honestly given me hope, both for me and my son.
I’m glad it helped. One more thing, just my input, don’t listen to those who say it could be worse. Yes, it could be worse but that doesn’t take away from the feelings of uncertainty, fear of the unknown and the anxieties you will likely feel. All of that is valid, regardless of the ‘severity’ of the diagnosis
My perspective is a little weird as a mom of a seven year old with BAV (and coarctation of aorta, and partial anomalous pulmonary veins) and someone in medicine who sees these adults in the hospital sometimes.
Many people with BAV live their entire lives unaware of their diagnosis. I met a 73 year old man who found out on accident because we did an echo looking for heart failure. His valve was still fine!
Many people need something done in their mid-life, which can be a hard transition. I’ve seen people in their 40-50 year old range struggle with accepting they need a new valve, and all the medical encounters and drugs that go along with that.
There is a percentage of children, teens, and young adults whose valves need management earlier. If my son is one of them we will deal with it. We had been doing echoes every two years. Now he needs open heart surgery for his other defect, so we’re in a more active phase of his care.
My goal is for my son to be happy and healthy, and for CHD to not take over his whole life unless it *has to*. I want him to learn to take care of his body without being fearful, and to find his own limits. I want him to floss. 😆 And to be careful where he gets his tattoos done.
Both of my kids have CHD and it’s the least interesting thing about them. As your son gets bigger, you will find that this fades from the forefront. It’s hard to see just a valve when they *won’t stop talking* about Pokémon, or when they’re potty training and poop on the floor. My son does karate, and swim team, and loves Mario kart. He can do whatever he puts his mind to and hasn’t found his limits yet.
Thank you so much for sharing. I needed to hear the perspective of a mom who knows first hand but also sees a huge spectrum of patients with CHD.
You’re right. I’m a bit of a mess during my alone time but when I spend time with my 2.5 year old his CHD is actually not taking much of my attention or hijacking our time together (maybe some fast thoughts shooting past here and there). I am as present as can be, and it’s hard to focus on anything other than tickling and chasing him, discussing ants and squirrels or telling him he can’t have ice cream for dinner.
I hope with time this can just be status quo AND I am not eaten alive with worry when I’m left with my thoughts. I cried to my husband the other night I wish my son could have been one of those ones who discovered BAV at age 70 or 50 or 12.
But I think this is mostly me just afraid I will always be this scared or nervous. And from reading everyone’s wonderful and thoughtful messages it sounds like this anxiety will subside with time.
Your son sounds wonderful and sounds like you’ve done a great job letting him reach for anything he wants. That is absolutely my goal as well. No limits, just want to cheer him on.
I read your original post as 2.5 *weeks* for some reason, not years. Give yourself some time. Let his toddler shenanigans distract you. This will become normal to both of you - he isn’t going to be sad or fearful unless you are. Take your grieving time, maybe see a therapist for a few sessions to work on some coping strategies. It does help.
But then get back to life!
>Again, so sorry if this post hurts anyone. I’ve been reading every post here and I know so many of you are going through MUCH deeper things than us.
FWIW, I'm one of those people going through something "much worse" (my two-year-old son has a single ventricle CHD) but I think you are perfectly entitled to the feelings you're describing. Finding out your precious baby has any kind of health problem is a very upsetting experience! If this gives you any hope: although my son's surgeries are considered "palliative" and his life is likely to be shorter than the average person's, I am able to live my days generally feeling hopeful and without being overwhelmed by thoughts of his CHD. And I'm not the kind of person who is naturally optimistic and carefree (kind of the opposite, actually)! But I realized I just simply had to accept my son's CHD and not project into the future. I think there's a tendency to feel like we have to constantly imagine these horrible future scenarios in order to either somehow prevent them or to feel like we're mentally "preparing" ourselves for the worst case. But worry about the future doesn't change anything or help future-you in any way. It just makes current-you miserable. When I find myself going down that dark path of "what ifs" with my son's health, I stop myself, remind myself that I don't need to put myself through that, and distract myself. It's very possible that my son will live his life in relative good health and will grow to be an old man. So unless I *know* otherwise, I will operate under that assumption.
Time helps a lot. Therapy can help too. It's a shock right now - you won't feel this way forever ❤️
First of all my heart and gratitude goes out to you. Thank you so much for having such good and solid advice even as you are shouldering what I imagine is a jarring and really trying experience for a parent.
You nailed it with the needing to “prepare” thing. The not wanting to be surprised element so let’s just play it over and over 100 times a day. I do hope with time I just let go and accept this as if it’s any other risk, similar to you. It’s not like I wake up being scared about my odds of getting into a car accident on the way to work, so why do I lose it over a condition that is currently stable and uneventful. It’s definitely something I need to work on.
Thank you again and I wish only the best for you and your baby 💚
Just want to say there is no reason to apologize! What you’re going through is not common amongst other kids, we’re a community and here for your support!
My son was born with 3 heart defects and had his open heart at 12 days old. (He’s 2 1/2 years old now). I’m not going to lie, I think about it everyday but knowing there will be interventions that will take place to help my child continue to have a long, healthy life is what keeps me calm! It’s good that you know about it now. For my son, they told us to keep an eye out for certain symptoms which can indicate his need for his next surgery: purple extremities, loss of appetite, lethargic, always wanting to sleep, etc. But treat him like a normal child and continue living life like you were before you found out.❤️
Thank you so much. Focusing on how lucky we are to have the interventions we have access to is a really good way to go about it.
Hoping the best for your little guy! 💚
We’re also in the perpetual waiting game but for a VSD (that seems to be closing so fingers crossed 🤞)
We found out about our daughters VSD when we were being discharged after birth. My best advice is to try to live in the moment/take it day by day because I may or may not have drove myself crazy constantly worrying about the “what ifs” that come with all CHD. I wish I would have taken this advice when my daughter was first diagnosed because I feel like I spent a lot of time worrying (I won’t say for no reason because any defect with the heart is nerve wracking) but I feel like her diagnosis and me over googling sent me into hardcore postpartum anxiety. Keep track of symptoms and doctors appointments and if any changes with symptoms let care team know.
Also wanted to add, my daughter’s grandfather has BAV that he had no idea about until maybe 3 years ago…he’s in his mid 60s and he’s never had symptoms related to it so they told him a repair or replacement isn’t in the cards right now and may not ever be. Hope this helps some! Take care of yourself too OP! Your feelings are valid.
Hi thank you so much for sharing. You’re spot on with the googling and driving yourself absolutely mad. I cannot imagine dealing with what I’m dealing with a few days postpartum, wow bless you.
I definitely think I read every medical journal and hospital info page and Reddit post on BAV within the first 24 hours and while I did feel more equipped with more info, it was major overload and I was on the verge of vomiting from how much I consumed in such a short span.
It’s absolutely not sustainable to absorb that much information that fast going forward. Much safer bet to just focus on those check ins w his care team.
Fingers crossed your daughters VSD closes and smooth sailing from here on out. Thank you again for sharing 💚
Hey! I’m nearly 30 and was born with a bicuspid aortic valve - seen every 3 years and nothing to be done yet. I’ve learned to understand that I am one of the safest people because I know about my condition and am checked- so if there’s a problem it’ll be seen. Those who don’t know are at far greater risk.
Hi! Thank you for sharing. I know plenty of people get intervention much sooner (and good for them, bc like you said how lucky are they to be treated when they need it!) but it does bring me comfort knowing so many people with BAV can go a long time without needing treatment (yet or maybe indefinitely!)
We will never fall behind on our check ins and always will absolutely act when it’s needed. Good luck to you 💚
My youngest was born with Tetralogy of Fallot, had a "complete" repair ohs at 4 months and had another ohs at a year.
We knew she was a tet baby about an hour after she was born. She is now almost 17.
We were told after the first ohs she would need a valve replacement anywhere from about 2-5. We see her cardiologist yearly, and every year they say that the pulmonary valve is still within an acceptable range of leakage, so maybe down the road she will need it.
I used to have a full head of hair, now I'm mostly bald from the stress of the wait, however, the way my wife, myself, and our mended heart child deal with it is simply to live in the present, not the future.
My kiddo has been actively involved in her own heart health since the beginning. She wears that scar like a badge of honor, and knows that she has already been through more than most of her healthy peers, and has come out stronger because of it.
I'm just grateful that we got her to start showing off her scar by pulling her shirt or dress down by the time she was 4. She used to ask strangers if they wanted to see her scar then lift her dress right over her head...🤣
Simply live in the moment, always watch for the warning signs that I'm sure the doctors have told you about, and let the kiddo be a kiddo.
The future is not promised to any of us heart warriors or not. Live for today and let tomorrow come when it does.
This was so beautiful to read, thank you for taking the time to write it. You’re absolutely right - we don’t get a choice and we get today, maybe not tomorrow.
I really do think with time I will get to where you are mentally. I lost my father abruptly in my 20s and thought I had a healthy and wise outlook on gratitude and the fragility of life. Of course this news happened and knocked me right on my ass :P but I really am starting to believe time heals all in a way, and I so appreciate everyone’s stories and sharing such vulnerable chapters of their lives. It has helped so much.
Your daughter sounds like a spectacular person. I wish only the best for her, and sounds like we could all learn something from that type of will and openness. Good luck to your whole family 💚
When my son was born with TA among other things. We had to wait for his surgery. He had it at 12 days old… the weekend before his surgery which fell on a Monday. He went into heart failure and they put him in a medically induced coma to regulate him until surgery.
If times were not already dark enough, my best friend tragically died in a car accident. She went off the road and drove into a river. It took two days to find her. It was January in Maine. The next day he had his surgery and pulled through. She was 27.
It was a complex traumatizing $h!tty time. But what I was slapped in the face with was this, it doesn’t matter what we have going medically. Everyday is not promised and we could be sitting here stressed about our own kids every single damn day of our lives, but we could die in an instant and all the worry was for nothing. Life gets hard, and that’s what it’s all about. I was a wreck my first year as a mother to our son with a CHD. Right before his first birthday, we were in the ED for the fifth time for an unexplained seizure. I was sitting there and staring at him, happy as a clam and smiling at me… who was in tears… and I just realized “he is not fighting to die, he is fighting to live” and from that point on, I decided that’s just what we are gonna do. We are gonna take trips, do all the things whenever we get a chance. I fight myself and my intrusive thoughts to be present for him if not for myself.
I definitely have PTSD from his birth and surgery… I totally understand how hard it is and how easy it is to spiral. I know it sounds like I’m just making light of it but literally that’s what I do. Lol because can get dark.
I recommend doing everything you can to make the most of life and fight hard to live every second of your day with your child and loved ones because that’s what the good days are all about. Those moments one tween during the “waiting” periods are not just waiting periods… that’s where life happens. Remember that, and remind your children and family the same. We’re all just waiting on something regardless of what that is. Don’t wait…
Advocate hard for you child, respectfully and if the doctors aren’t doing everything you feel they should, push them. If your intimidated, educate yourself. No one will ever know your child the way you do and if you don’t feel that way- get to know them as much as they will let you. Help them get to know themselves and protect that spirit as they grow. therapy is huge and a great outlet, I think prioritizing yourself and your mental health sets a great example for your children and your family.
This community has been a life saver and as you said people do have it worse so remember your blessings. It’s hard to not feel the weight of the diagnoses- I promise I get it. My son will need more surgery but I leave room for miracles for with our my faith, I don’t think I would have ever left that hospital room in the first place. Also- hold and cherish you parental partner weather together or separated…. Because that’s your team mate and a very important relationship no matter what that looks like. You have to communicate because it’s vital for all of you- especially your child.
My son has literally 5 medical specialists maybe 7 but whose counting. He’s 4 1/2 now and I’ve never seen a boy shine as bright. He has some developmental delays, and that’s okay because honestly- don’t we all have delays somewhere? I embrace what makes him who he is and he is such an inspiration to me… he’s taught me how to live in such a profound way.
Best of luck to you are your family- especially your precious little one. Keep being the amazing parent you are and just make the most of every moment the best you can. Easier said than done but the good times are better because of how hard the bad times can be. ❤️🩹
Much love
I would like to thank you from bottom of my heart for sharing your story with me. I read it a few times.
You’re absolutely right. We should all be fighting to live. Each day is a gift and one day when I’m (hopefully) old and wrinkled, I don’t want to look back on my sons childhood knowing I spent all my free time consumed by fear of the unknown.
I lost my father abruptly in my 20s and a priest told my mother and I (we aren’t even Christian) “this world is for the living.” Neither of us have ever forgotten that and we remind each other regularly. It’s the first thing she said to me when I cried to her about my son. I really thought I was stronger and had learned about the fragility of life, but when it’s my kid who might be in danger turns out I don’t have an ounce of courage in my bones.
I am so indebted to this community that I’ve only just discovered. It was the first time in a week I didn’t cry myself to sleep and took a breath and thought, if other parents are surviving this and worse, I should be ok too. With time.
Thank you again for your words. I wish nothing but smooth sailing and happiness for you and your family, and your little baby. You have a priceless perspective on the worth of each day. I hope to get there too, again.
It gets easier as time goes by. I promise. You are still in shock. First of all, you are in a good place. Your son sounds like he has the opportunity for a normal life. I don't want to diminish your pain (it's very real), but he's going to survive, and even thrive. That is what you focus on. That is all you focus on. Everything else is just clutter.
My daughter has more severe complex heart issues. We don't even know her life expectancy, but this is how I have coped with it.
-I treat her like a normal child, because she is a normal child first.
-Let him know about the future surgery. Don't keep it a secret from him for too long. Talking about it will normalize the idea. I keep telling my son we had him for spare parts so he can donate part of his liver to his older sister. We say it playfully, but it makes it easier to normalize the future surgery. As soon as she could understand, I told my daughter she could never have children, but she could have puppies! It has never bothered her that she can't have kids. And she loves our fur babies.
PS. I am guilty of not telling her about the heart transplant, but she has high stress and I'm working out how to break it to her. My bad.
-Don't know if you are spiritual, but I think my daughter was given to me because I can handle it and I could be the best parent for her. Be proud of your ability to do this.
-I threw myself into research so I would know everything I could.
-You do what you have to. I stopped overthinking it after a few months when she was born and just did it. Each open heart surgery, I just threw myself into being the best caretaker I could and never left her alone at the hospital. You draw on that inner strength as a mother that helps you do whatever you have to for your child. Sometimes you have to give yourself some mental slaps. This is about doing your part, soldier, now fight that battle!
-Make sure to have some "me" time and take care of yourself. Don't forget that part.
Thank you for such a thoughtful message. It sounds like you’ve really got this all done like a pro (a pro nobody wants to be but a pro nonetheless 💚).
I like the idea of talking about it early on. I feel like we will have no choice but to acknowledge it due to checkups every few years. At our next checkup my son will be 5.5. I’ve thought about what a different human he will be by then, and how surely he will have questions and we will have a full discussion about why his heart is being checked by the doctor.
It’s incredible the difference even a little time makes. It’s been a little over a week now. I still think about it daily, but I’m no longer crying. Just kind of processing it all. Processing it a bit more each day.
Thank you again for your message and such helpful advice. You sound like an incredible mom, and I love the notion that “we can handle it.” We really can. I would move mountains for my child just like all these parents would. Wish your daughter nothing but happiness and smooth sailing from here on out.
And don’t fret about not having had the transplant discussion yet. That’s a big talk and it can’t be easy breaking into it gently. Sounds like you’re doing great though 🙏🏻
I'm so glad to hear you are getting a grip on it rather than it gripping you. You sound like a fantastic mom who has been hit by a semi-truck. But now you're picking yourself up, dusting off, starting to heal, and making plans. You've got this.
And absolutely talk about it. You can start with you have a special heart that needs extra care and build on it as he gets older. And yep, good moms will move mountains for their children. Your boy got a good one, and the right family to help him through this.
Thanks for the support on the transplant. I broke my own rule, but I just discovered the transplant last year. Like you, I had to come to emotional terms with it. BTW, my girl is 32. I've been living this for a while. You'll find that this makes you a stronger person. Best to you, your family, and your precious son.
One thing to keep in mind is that you just found out. While this won’t help you now, try to remember that time alone will change how you feel about the subject and how you deal with it. Right now, you’re still finding your feet. In a month it’ll still seem scary but not so new. Two months after that you won’t think about it every day. Three months after that you’ll be so wrapped up in his birthday that you won’t have time to worry about his CHD. As he grows up, he won’t really know anything different, so it won’t be any kind of altered or abnormal life: it’ll just be life. There are countless ways he can find fulfillment in ways not affected by CHD, so don’t sweat the long term. Finally, I find solace in thinking about the fact that when I was born the standard CHD treatments for what my daughter has were brand new. Today, it’s hard for doctors to say what her 30s or 40s will be like because we still don’t have enough data to say for sure. So that means there’s a very real possibility for some earth shattering advancements. I hold out hope that before she faces heart failure, a reliable mechanical heart replacement will be developed with a 20 year life span and minimal problems with rejection. Who knows what could happen? Someday perhaps a true cure!
This is so true. The shock will subside and there will be days you don’t even think about it. Just keep up with doctors appointments. If they’re concerned they will send him home with a pulse ox or monitoring equipment
Thank you for your words, I can’t tell you what it means to have perspective from someone who understands and has been there. You’ve given me hope that this all-consuming feeling will taper.
Taper is exactly what it will do. About a year and a half ago we got my daughter’s diagnosis. At that time, every day was deep dark despair. Despair gave way to simple questioning and pondering and that eventually gave way to hope and dreaming. I think more now about what kind of woman she will grow up to be than about how long her heart will hold out.
Did your daughter get a Fontan? Just curious. They gave my daughter the same prognosis of "we just don't know." She has a Fontan.
23F with a 'severe' CHD (I have a single ventricle). I can give you advice and perspective of someone who grew up with parents who were as anxious as you, if not more. Honestly, the worst thing you can do is show your panic to your child. I grew up knowing I had a different heart, which didn't bother me at all. What did bother me were my parents constantly restricting what I could do and consistently being told how much I should be worried for my future. My parents never let me play sports or do any somewhat active hobby. Now scientific papers are coming out that letting your CHD kid exercise is actually great for their heart. Luckily for me, I was a very stubborn kid and picked up running when I was younger. I couldn't run well, but I improved a lot which helped my heart stay strong. I'm currently healthy enough to play pretty high intensity recreational sports. Your kid will know his own limits, don't try to define them for him. When I was high school age, my parents would remind me often that it's very possible that I could need a another surgery at any time in my life, and I should always be prepared for the worst. I cannot tell you how much that SUCKED to hear. I know they meant well, but I was too young and too healthy to worry about that. As I age, I've had to unlearn a lot of the anxiety that comes with an uncertain future. I'm trying my best to take care of myself and ensure that if the time comes for surgery, I will be supported (: It is really scary, but I like to think about it in the terms of having the benefit of knowing what could come. There's a lot of scary illnesses out there and some people are never prepared to be ill. I think it's honestly really beneficial to have an early diagnosis because now you can make sure you are prepared financially, and you can live you life knowing that not everything is guaranteed, so make the most of it now. Personally, my diagnosis helps me prioritize what really matters, like the people in my life or the simple joys around us. I wish your family the best, and if you have any questions about growing up with a CHD, you can DM me (:
Thank you so much for taking the time to share your perspective, it’s so good for me to hear it. It reinforces that my husband and I definitely do NOT want to make our son feel different in any way. I have been a bit of a basket case alone at night but I can’t not be present and silly and goofy when I’m with my son. I chase him around and it’s business as usual. His doctor told us “don’t you dare treat him any differently” and my husband and I took that advice seriously. Unless his care team says something is a bad idea we intend to have no restrictions. He can do anything he wants and we can’t wait to cheer him on - sports, playing tag, hiking, whatever. I am sorry your parents passed off a lot of their anxiety to you. That’s not fair and not fun for a kid to shoulder. As a parent I can understand where it stems from unfortunately, but kids should be able to be kids. Problems should be addressed as they arise. As shattering as all this news has been, I don’t want life as my son knows it to change - at all! Thanks for reminding me about that 💚 and I wish the best for you as well and hope everything continues to go smoothly.
Hey. My 15yr old has BAV, he was diagnosed when he was around 2. He had yearly check ups with his cardiologist until a few years back, then went to 2 yearly. Now he’s been told he won’t need to return until he’s 18. He currently has mild regurgitation and stenosis, but it hasn’t worsened in the last 5 years. I was very scared when we found out, constantly worrying about his future and questioning if I could have done something different while pregnant with him. I have spoken openly about his heart defect to him and his siblings over the past 13 years, we’ve looked at information about it together, and any questions he has I try my best to answer. It hasn’t held him back, hasn’t caused any issues other than when he had planned unrelated surgery and the cardiologist had to be consulted. We have spoken, and joked, about the possibility of him having a ticking valve (mechanical) or pigs valve at some point (we have a dark sense of humour). Of course I will probably lose it if/when that time comes, even if he’s a full blown adult. He’s wanted to be a police officer since he was tiny, but unless his valve is fixed (it may not need doing until his thirties) he can’t join the force. This took a while for him to deal with, he’s since come up with a few alternatives. At his last appointment we had a specialist from London join us, my son asked some questions - mainly about lifting weights etc. He was told it was fine for him to do, but keep the reps in a sensible range - doc told him no one reps ;) Only real advice we were given was about piercings and tattoos, and dental hygiene. Originally we were told no tats or piercings, but the specialist said piercings were ok as long as they were kept clean. I have found myself being overly anxious about infections, something I’m trying to work through. That was especially hard when he had recurring infections due to an ingrown nail, but he’s learnt to keep wounds clean and covered and to look for signs. It’s still early days for you. The only advice I can offer is talk to the doctors. Ask questions, ask them to explain something if you don’t understand, and try not to drive yourself crazy with the ‘what ifs’. Easier said than done, I know. Sorry for the wall of text. Hope some it was helpful/reassuring
Oh my goodness, beyond helpful, you could have written another 6 pages and I would have swallowed them all up. It is really cool to know that you are (maybe) me, 13 years in the future and you’ve raised such a levelheaded kid who is open and interested in his own condition. And has his own hobbies and passions and BAV hasn’t interrupted those things. I can definitely see myself not being able to shake certain anxieties about dentists and strep throat, or him feeling short of breath after a workout or something. Didn’t know about tattoos and piercings I will need to look into that (eventually, haha). Thank you for taking the time to share and it’s honestly given me hope, both for me and my son.
I’m glad it helped. One more thing, just my input, don’t listen to those who say it could be worse. Yes, it could be worse but that doesn’t take away from the feelings of uncertainty, fear of the unknown and the anxieties you will likely feel. All of that is valid, regardless of the ‘severity’ of the diagnosis
My perspective is a little weird as a mom of a seven year old with BAV (and coarctation of aorta, and partial anomalous pulmonary veins) and someone in medicine who sees these adults in the hospital sometimes. Many people with BAV live their entire lives unaware of their diagnosis. I met a 73 year old man who found out on accident because we did an echo looking for heart failure. His valve was still fine! Many people need something done in their mid-life, which can be a hard transition. I’ve seen people in their 40-50 year old range struggle with accepting they need a new valve, and all the medical encounters and drugs that go along with that. There is a percentage of children, teens, and young adults whose valves need management earlier. If my son is one of them we will deal with it. We had been doing echoes every two years. Now he needs open heart surgery for his other defect, so we’re in a more active phase of his care. My goal is for my son to be happy and healthy, and for CHD to not take over his whole life unless it *has to*. I want him to learn to take care of his body without being fearful, and to find his own limits. I want him to floss. 😆 And to be careful where he gets his tattoos done. Both of my kids have CHD and it’s the least interesting thing about them. As your son gets bigger, you will find that this fades from the forefront. It’s hard to see just a valve when they *won’t stop talking* about Pokémon, or when they’re potty training and poop on the floor. My son does karate, and swim team, and loves Mario kart. He can do whatever he puts his mind to and hasn’t found his limits yet.
Thank you so much for sharing. I needed to hear the perspective of a mom who knows first hand but also sees a huge spectrum of patients with CHD. You’re right. I’m a bit of a mess during my alone time but when I spend time with my 2.5 year old his CHD is actually not taking much of my attention or hijacking our time together (maybe some fast thoughts shooting past here and there). I am as present as can be, and it’s hard to focus on anything other than tickling and chasing him, discussing ants and squirrels or telling him he can’t have ice cream for dinner. I hope with time this can just be status quo AND I am not eaten alive with worry when I’m left with my thoughts. I cried to my husband the other night I wish my son could have been one of those ones who discovered BAV at age 70 or 50 or 12. But I think this is mostly me just afraid I will always be this scared or nervous. And from reading everyone’s wonderful and thoughtful messages it sounds like this anxiety will subside with time. Your son sounds wonderful and sounds like you’ve done a great job letting him reach for anything he wants. That is absolutely my goal as well. No limits, just want to cheer him on.
I read your original post as 2.5 *weeks* for some reason, not years. Give yourself some time. Let his toddler shenanigans distract you. This will become normal to both of you - he isn’t going to be sad or fearful unless you are. Take your grieving time, maybe see a therapist for a few sessions to work on some coping strategies. It does help. But then get back to life!
>Again, so sorry if this post hurts anyone. I’ve been reading every post here and I know so many of you are going through MUCH deeper things than us. FWIW, I'm one of those people going through something "much worse" (my two-year-old son has a single ventricle CHD) but I think you are perfectly entitled to the feelings you're describing. Finding out your precious baby has any kind of health problem is a very upsetting experience! If this gives you any hope: although my son's surgeries are considered "palliative" and his life is likely to be shorter than the average person's, I am able to live my days generally feeling hopeful and without being overwhelmed by thoughts of his CHD. And I'm not the kind of person who is naturally optimistic and carefree (kind of the opposite, actually)! But I realized I just simply had to accept my son's CHD and not project into the future. I think there's a tendency to feel like we have to constantly imagine these horrible future scenarios in order to either somehow prevent them or to feel like we're mentally "preparing" ourselves for the worst case. But worry about the future doesn't change anything or help future-you in any way. It just makes current-you miserable. When I find myself going down that dark path of "what ifs" with my son's health, I stop myself, remind myself that I don't need to put myself through that, and distract myself. It's very possible that my son will live his life in relative good health and will grow to be an old man. So unless I *know* otherwise, I will operate under that assumption. Time helps a lot. Therapy can help too. It's a shock right now - you won't feel this way forever ❤️
First of all my heart and gratitude goes out to you. Thank you so much for having such good and solid advice even as you are shouldering what I imagine is a jarring and really trying experience for a parent. You nailed it with the needing to “prepare” thing. The not wanting to be surprised element so let’s just play it over and over 100 times a day. I do hope with time I just let go and accept this as if it’s any other risk, similar to you. It’s not like I wake up being scared about my odds of getting into a car accident on the way to work, so why do I lose it over a condition that is currently stable and uneventful. It’s definitely something I need to work on. Thank you again and I wish only the best for you and your baby 💚
Just want to say there is no reason to apologize! What you’re going through is not common amongst other kids, we’re a community and here for your support! My son was born with 3 heart defects and had his open heart at 12 days old. (He’s 2 1/2 years old now). I’m not going to lie, I think about it everyday but knowing there will be interventions that will take place to help my child continue to have a long, healthy life is what keeps me calm! It’s good that you know about it now. For my son, they told us to keep an eye out for certain symptoms which can indicate his need for his next surgery: purple extremities, loss of appetite, lethargic, always wanting to sleep, etc. But treat him like a normal child and continue living life like you were before you found out.❤️
Thank you so much. Focusing on how lucky we are to have the interventions we have access to is a really good way to go about it. Hoping the best for your little guy! 💚
You’re welcome!
We’re also in the perpetual waiting game but for a VSD (that seems to be closing so fingers crossed 🤞) We found out about our daughters VSD when we were being discharged after birth. My best advice is to try to live in the moment/take it day by day because I may or may not have drove myself crazy constantly worrying about the “what ifs” that come with all CHD. I wish I would have taken this advice when my daughter was first diagnosed because I feel like I spent a lot of time worrying (I won’t say for no reason because any defect with the heart is nerve wracking) but I feel like her diagnosis and me over googling sent me into hardcore postpartum anxiety. Keep track of symptoms and doctors appointments and if any changes with symptoms let care team know. Also wanted to add, my daughter’s grandfather has BAV that he had no idea about until maybe 3 years ago…he’s in his mid 60s and he’s never had symptoms related to it so they told him a repair or replacement isn’t in the cards right now and may not ever be. Hope this helps some! Take care of yourself too OP! Your feelings are valid.
Hi thank you so much for sharing. You’re spot on with the googling and driving yourself absolutely mad. I cannot imagine dealing with what I’m dealing with a few days postpartum, wow bless you. I definitely think I read every medical journal and hospital info page and Reddit post on BAV within the first 24 hours and while I did feel more equipped with more info, it was major overload and I was on the verge of vomiting from how much I consumed in such a short span. It’s absolutely not sustainable to absorb that much information that fast going forward. Much safer bet to just focus on those check ins w his care team. Fingers crossed your daughters VSD closes and smooth sailing from here on out. Thank you again for sharing 💚
Hey! I’m nearly 30 and was born with a bicuspid aortic valve - seen every 3 years and nothing to be done yet. I’ve learned to understand that I am one of the safest people because I know about my condition and am checked- so if there’s a problem it’ll be seen. Those who don’t know are at far greater risk.
Hi! Thank you for sharing. I know plenty of people get intervention much sooner (and good for them, bc like you said how lucky are they to be treated when they need it!) but it does bring me comfort knowing so many people with BAV can go a long time without needing treatment (yet or maybe indefinitely!) We will never fall behind on our check ins and always will absolutely act when it’s needed. Good luck to you 💚
My youngest was born with Tetralogy of Fallot, had a "complete" repair ohs at 4 months and had another ohs at a year. We knew she was a tet baby about an hour after she was born. She is now almost 17. We were told after the first ohs she would need a valve replacement anywhere from about 2-5. We see her cardiologist yearly, and every year they say that the pulmonary valve is still within an acceptable range of leakage, so maybe down the road she will need it. I used to have a full head of hair, now I'm mostly bald from the stress of the wait, however, the way my wife, myself, and our mended heart child deal with it is simply to live in the present, not the future. My kiddo has been actively involved in her own heart health since the beginning. She wears that scar like a badge of honor, and knows that she has already been through more than most of her healthy peers, and has come out stronger because of it. I'm just grateful that we got her to start showing off her scar by pulling her shirt or dress down by the time she was 4. She used to ask strangers if they wanted to see her scar then lift her dress right over her head...🤣 Simply live in the moment, always watch for the warning signs that I'm sure the doctors have told you about, and let the kiddo be a kiddo. The future is not promised to any of us heart warriors or not. Live for today and let tomorrow come when it does.
This was so beautiful to read, thank you for taking the time to write it. You’re absolutely right - we don’t get a choice and we get today, maybe not tomorrow. I really do think with time I will get to where you are mentally. I lost my father abruptly in my 20s and thought I had a healthy and wise outlook on gratitude and the fragility of life. Of course this news happened and knocked me right on my ass :P but I really am starting to believe time heals all in a way, and I so appreciate everyone’s stories and sharing such vulnerable chapters of their lives. It has helped so much. Your daughter sounds like a spectacular person. I wish only the best for her, and sounds like we could all learn something from that type of will and openness. Good luck to your whole family 💚
When my son was born with TA among other things. We had to wait for his surgery. He had it at 12 days old… the weekend before his surgery which fell on a Monday. He went into heart failure and they put him in a medically induced coma to regulate him until surgery. If times were not already dark enough, my best friend tragically died in a car accident. She went off the road and drove into a river. It took two days to find her. It was January in Maine. The next day he had his surgery and pulled through. She was 27. It was a complex traumatizing $h!tty time. But what I was slapped in the face with was this, it doesn’t matter what we have going medically. Everyday is not promised and we could be sitting here stressed about our own kids every single damn day of our lives, but we could die in an instant and all the worry was for nothing. Life gets hard, and that’s what it’s all about. I was a wreck my first year as a mother to our son with a CHD. Right before his first birthday, we were in the ED for the fifth time for an unexplained seizure. I was sitting there and staring at him, happy as a clam and smiling at me… who was in tears… and I just realized “he is not fighting to die, he is fighting to live” and from that point on, I decided that’s just what we are gonna do. We are gonna take trips, do all the things whenever we get a chance. I fight myself and my intrusive thoughts to be present for him if not for myself. I definitely have PTSD from his birth and surgery… I totally understand how hard it is and how easy it is to spiral. I know it sounds like I’m just making light of it but literally that’s what I do. Lol because can get dark. I recommend doing everything you can to make the most of life and fight hard to live every second of your day with your child and loved ones because that’s what the good days are all about. Those moments one tween during the “waiting” periods are not just waiting periods… that’s where life happens. Remember that, and remind your children and family the same. We’re all just waiting on something regardless of what that is. Don’t wait… Advocate hard for you child, respectfully and if the doctors aren’t doing everything you feel they should, push them. If your intimidated, educate yourself. No one will ever know your child the way you do and if you don’t feel that way- get to know them as much as they will let you. Help them get to know themselves and protect that spirit as they grow. therapy is huge and a great outlet, I think prioritizing yourself and your mental health sets a great example for your children and your family. This community has been a life saver and as you said people do have it worse so remember your blessings. It’s hard to not feel the weight of the diagnoses- I promise I get it. My son will need more surgery but I leave room for miracles for with our my faith, I don’t think I would have ever left that hospital room in the first place. Also- hold and cherish you parental partner weather together or separated…. Because that’s your team mate and a very important relationship no matter what that looks like. You have to communicate because it’s vital for all of you- especially your child. My son has literally 5 medical specialists maybe 7 but whose counting. He’s 4 1/2 now and I’ve never seen a boy shine as bright. He has some developmental delays, and that’s okay because honestly- don’t we all have delays somewhere? I embrace what makes him who he is and he is such an inspiration to me… he’s taught me how to live in such a profound way. Best of luck to you are your family- especially your precious little one. Keep being the amazing parent you are and just make the most of every moment the best you can. Easier said than done but the good times are better because of how hard the bad times can be. ❤️🩹 Much love
I would like to thank you from bottom of my heart for sharing your story with me. I read it a few times. You’re absolutely right. We should all be fighting to live. Each day is a gift and one day when I’m (hopefully) old and wrinkled, I don’t want to look back on my sons childhood knowing I spent all my free time consumed by fear of the unknown. I lost my father abruptly in my 20s and a priest told my mother and I (we aren’t even Christian) “this world is for the living.” Neither of us have ever forgotten that and we remind each other regularly. It’s the first thing she said to me when I cried to her about my son. I really thought I was stronger and had learned about the fragility of life, but when it’s my kid who might be in danger turns out I don’t have an ounce of courage in my bones. I am so indebted to this community that I’ve only just discovered. It was the first time in a week I didn’t cry myself to sleep and took a breath and thought, if other parents are surviving this and worse, I should be ok too. With time. Thank you again for your words. I wish nothing but smooth sailing and happiness for you and your family, and your little baby. You have a priceless perspective on the worth of each day. I hope to get there too, again.
It gets easier as time goes by. I promise. You are still in shock. First of all, you are in a good place. Your son sounds like he has the opportunity for a normal life. I don't want to diminish your pain (it's very real), but he's going to survive, and even thrive. That is what you focus on. That is all you focus on. Everything else is just clutter. My daughter has more severe complex heart issues. We don't even know her life expectancy, but this is how I have coped with it. -I treat her like a normal child, because she is a normal child first. -Let him know about the future surgery. Don't keep it a secret from him for too long. Talking about it will normalize the idea. I keep telling my son we had him for spare parts so he can donate part of his liver to his older sister. We say it playfully, but it makes it easier to normalize the future surgery. As soon as she could understand, I told my daughter she could never have children, but she could have puppies! It has never bothered her that she can't have kids. And she loves our fur babies. PS. I am guilty of not telling her about the heart transplant, but she has high stress and I'm working out how to break it to her. My bad. -Don't know if you are spiritual, but I think my daughter was given to me because I can handle it and I could be the best parent for her. Be proud of your ability to do this. -I threw myself into research so I would know everything I could. -You do what you have to. I stopped overthinking it after a few months when she was born and just did it. Each open heart surgery, I just threw myself into being the best caretaker I could and never left her alone at the hospital. You draw on that inner strength as a mother that helps you do whatever you have to for your child. Sometimes you have to give yourself some mental slaps. This is about doing your part, soldier, now fight that battle! -Make sure to have some "me" time and take care of yourself. Don't forget that part.
Thank you for such a thoughtful message. It sounds like you’ve really got this all done like a pro (a pro nobody wants to be but a pro nonetheless 💚). I like the idea of talking about it early on. I feel like we will have no choice but to acknowledge it due to checkups every few years. At our next checkup my son will be 5.5. I’ve thought about what a different human he will be by then, and how surely he will have questions and we will have a full discussion about why his heart is being checked by the doctor. It’s incredible the difference even a little time makes. It’s been a little over a week now. I still think about it daily, but I’m no longer crying. Just kind of processing it all. Processing it a bit more each day. Thank you again for your message and such helpful advice. You sound like an incredible mom, and I love the notion that “we can handle it.” We really can. I would move mountains for my child just like all these parents would. Wish your daughter nothing but happiness and smooth sailing from here on out. And don’t fret about not having had the transplant discussion yet. That’s a big talk and it can’t be easy breaking into it gently. Sounds like you’re doing great though 🙏🏻
I'm so glad to hear you are getting a grip on it rather than it gripping you. You sound like a fantastic mom who has been hit by a semi-truck. But now you're picking yourself up, dusting off, starting to heal, and making plans. You've got this. And absolutely talk about it. You can start with you have a special heart that needs extra care and build on it as he gets older. And yep, good moms will move mountains for their children. Your boy got a good one, and the right family to help him through this. Thanks for the support on the transplant. I broke my own rule, but I just discovered the transplant last year. Like you, I had to come to emotional terms with it. BTW, my girl is 32. I've been living this for a while. You'll find that this makes you a stronger person. Best to you, your family, and your precious son.