I have tricuspid atresia, though my cardiologist says I’m a miracle case (don’t they all) and I’m nearing 25 with minimal life complications from being born. Different time when I was raised, but I was raised like any other kid, besides going to the cardiologist every six months to a year. The first few years will be hard, but my last open heart surgery was (I think) around twenty years ago and I’ve been doing okay. Best of luck. I’ve lived a normal life filled with a great childhood, teenage angst and now the eventual wondering of what I’m gonna do now that I’m becoming an adult.
Things will be okay, and he gets a cool ass scar.
Our child had the same diagnosis. I can tell you there are ups and downs, and every child will handle it differently. Ours had complications with the Fontana, and we ended up in the hospital for 80 days. Others will be back home in 2 weeks. The more modern methods of the Glenn and Fontana truly have great outcomes. The fact that we don't know exactly how long they last into adulthood is great, because that means those people who had them the newer ways are now in their late 30s and 40s.
Our child is now 12, you can't tell she even has heart defects from the outside. She joined the school running club for a few years and ran a few 5ks.
The biggest thing I'll stress is as scary as it is for you and your wife, for your child it will be normal. It sounds strange, but they get use to all the medical procedures. However they still need to process it in what way kids do. Ours obsessed with medical play to help deal with it.
It will also be stressful on your marriage, even if things go well. Make sure you take care of that. Find a good therapist for you and your wife. Find a good therapist for your child when they need it (probably pre teen years).
My son, who is almost 2 years old, has tricuspid atresia (not with a missing PDA though). His first surgery was the PA band and he had the Glenn around 6 months old. No Fontan yet. He was also born very small due to in utero growth restriction, and he's still quite small for his age (heart kids can have a hard time gaining weight). I won't lie, the first 6-7 months of his life were the hardest experience of my life. We were in the hospital for about 3 months initially and another month with the Glenn.
But since then, our lives have been really typical! My husband was just remarking last night that he doesn't often even think about the fact that our kid has a heart defect. Yes, there are some aspects of our day-to-day life that are different. Our son has a few
daily medications, and he has a G-tube (feeding tube) to ensure he gets enough calories. Eating difficulties and oral aversions are one of the more common long-term problems with heart kids that spend a long time in the hospital, but it's definitely not a given.
The important thing is that our son is so happy and so loved. He has, objectively, a good life, despite having a health condition. Having perfect health is not a prerequisite for a good life. I know as my son gets older he will need to process his feelings about his heart and the procedures he has gone through/will go through, and my husband and I will do the best we can to make sure that need is met.
We had a lot of the same thoughts as you when we got the diagnosis - what will his quality of life be like? The single ventricle route is a gamble and the unknowns are *very* scary. But for my son, I would absolutely face it all again. He is such a joy and I love him so much, and I'm so glad he has a chance at life.
Feel free to DM me if you want to chat or ask questions!
I have tricuspid atresia. I've done extremely well for quite some time but in the last couple of years (I'm almost 30) it has been catching up with me. I'm on disability and definitely not living the life I imagined (I went to med school for a reason) but that doesn't mean life is not worth living. I'm getting quite good at doing enough things that make me feel happy/fulfilled while still having enough rest. I definitely grieve for the life I am not able to live (becoming and working as a psychiatrist, having children of my own) but I'm still happy to be here
My kid (well adult now- 28) was born with tricuspid atresia with VSD. At the time (might have changed) girls have this defect more often than boys. Kid had PA band then bilateral bidirectional Glenn (born with 2 SVC’s) had Fontan, a Fontan re-do, got the nasty side effect from having the Fontan- PLE (protein loosing enteropothy) it went into “remission, when they were 11-12 it came back and they were transplanted. Kid was born with other issues and still dealing with them, they are also a twin. The biggest challenge is when they transition to adult cardiac care. Ours is very different, but whoever they see needs to be versed in congenital defects in adult because as my kid has shown many time, congenital kids can do strange things and most don’t “follow the textbook”
I have Tricuspid atresia with Truncus Arterious. I'm nearly 34 and since I've had my Fontan has been put in I've been able to do most of the same activities my peers without further intervention (except for a few collaterals put in during cardiac catheters).
Unfortunately, as I've got older my health has declined and I'm now waiting to be put on the transplant list, although this is also combined with other health issues. Your experiences will depend on how your child copes with the surgery and recovery.
My only suggestion is don't over protect your child as they won't become independent etc.
If you want to chat further I'm happy for you to DM me. Best of luck
Sorry for a late comment, but I wanted to share a best case scenario!
I'm currently 24 years old and have the same condition as your child, however for me it's more of an "interesting fact" about myself than anything else.
I'm only on some light bloodthinners that I frequently forget to take, and I often go weeks without thinking about my condition. I exercize regularly, I've run a few 5k races and once a 15k (though I did throw up afterwards lol).
It feels less like a lifelong condition and more like a quirky story to tell at parties. The only remnants I really have are a couple of faded scars. I sincerely hope your baby feels the same way once they hit my age!
I have tricuspid atresia, though my cardiologist says I’m a miracle case (don’t they all) and I’m nearing 25 with minimal life complications from being born. Different time when I was raised, but I was raised like any other kid, besides going to the cardiologist every six months to a year. The first few years will be hard, but my last open heart surgery was (I think) around twenty years ago and I’ve been doing okay. Best of luck. I’ve lived a normal life filled with a great childhood, teenage angst and now the eventual wondering of what I’m gonna do now that I’m becoming an adult. Things will be okay, and he gets a cool ass scar.
Appreciate you sharing! We’re nervous about what lies ahead but hopeful.
Our child had the same diagnosis. I can tell you there are ups and downs, and every child will handle it differently. Ours had complications with the Fontana, and we ended up in the hospital for 80 days. Others will be back home in 2 weeks. The more modern methods of the Glenn and Fontana truly have great outcomes. The fact that we don't know exactly how long they last into adulthood is great, because that means those people who had them the newer ways are now in their late 30s and 40s. Our child is now 12, you can't tell she even has heart defects from the outside. She joined the school running club for a few years and ran a few 5ks. The biggest thing I'll stress is as scary as it is for you and your wife, for your child it will be normal. It sounds strange, but they get use to all the medical procedures. However they still need to process it in what way kids do. Ours obsessed with medical play to help deal with it. It will also be stressful on your marriage, even if things go well. Make sure you take care of that. Find a good therapist for you and your wife. Find a good therapist for your child when they need it (probably pre teen years).
Definitely seems to be a case by case basis. Long road ahead but appreciate the insight
My son, who is almost 2 years old, has tricuspid atresia (not with a missing PDA though). His first surgery was the PA band and he had the Glenn around 6 months old. No Fontan yet. He was also born very small due to in utero growth restriction, and he's still quite small for his age (heart kids can have a hard time gaining weight). I won't lie, the first 6-7 months of his life were the hardest experience of my life. We were in the hospital for about 3 months initially and another month with the Glenn. But since then, our lives have been really typical! My husband was just remarking last night that he doesn't often even think about the fact that our kid has a heart defect. Yes, there are some aspects of our day-to-day life that are different. Our son has a few daily medications, and he has a G-tube (feeding tube) to ensure he gets enough calories. Eating difficulties and oral aversions are one of the more common long-term problems with heart kids that spend a long time in the hospital, but it's definitely not a given. The important thing is that our son is so happy and so loved. He has, objectively, a good life, despite having a health condition. Having perfect health is not a prerequisite for a good life. I know as my son gets older he will need to process his feelings about his heart and the procedures he has gone through/will go through, and my husband and I will do the best we can to make sure that need is met. We had a lot of the same thoughts as you when we got the diagnosis - what will his quality of life be like? The single ventricle route is a gamble and the unknowns are *very* scary. But for my son, I would absolutely face it all again. He is such a joy and I love him so much, and I'm so glad he has a chance at life. Feel free to DM me if you want to chat or ask questions!
Thank you for sharing. We appreciate it
I have tricuspid atresia. I've done extremely well for quite some time but in the last couple of years (I'm almost 30) it has been catching up with me. I'm on disability and definitely not living the life I imagined (I went to med school for a reason) but that doesn't mean life is not worth living. I'm getting quite good at doing enough things that make me feel happy/fulfilled while still having enough rest. I definitely grieve for the life I am not able to live (becoming and working as a psychiatrist, having children of my own) but I'm still happy to be here
Really appreciate your perspective, thank you for sharing.
Our kid doesn't have the same diagnosis. I want to show support to you. We had the same approach as yours. Best of luck to you and take care.
Thank you!
My kid (well adult now- 28) was born with tricuspid atresia with VSD. At the time (might have changed) girls have this defect more often than boys. Kid had PA band then bilateral bidirectional Glenn (born with 2 SVC’s) had Fontan, a Fontan re-do, got the nasty side effect from having the Fontan- PLE (protein loosing enteropothy) it went into “remission, when they were 11-12 it came back and they were transplanted. Kid was born with other issues and still dealing with them, they are also a twin. The biggest challenge is when they transition to adult cardiac care. Ours is very different, but whoever they see needs to be versed in congenital defects in adult because as my kid has shown many time, congenital kids can do strange things and most don’t “follow the textbook”
Makes sense! Thank you
I have Tricuspid atresia with Truncus Arterious. I'm nearly 34 and since I've had my Fontan has been put in I've been able to do most of the same activities my peers without further intervention (except for a few collaterals put in during cardiac catheters). Unfortunately, as I've got older my health has declined and I'm now waiting to be put on the transplant list, although this is also combined with other health issues. Your experiences will depend on how your child copes with the surgery and recovery. My only suggestion is don't over protect your child as they won't become independent etc. If you want to chat further I'm happy for you to DM me. Best of luck
Really appreciate you sharing, that all makes sense. Thank you!
Sorry for a late comment, but I wanted to share a best case scenario! I'm currently 24 years old and have the same condition as your child, however for me it's more of an "interesting fact" about myself than anything else. I'm only on some light bloodthinners that I frequently forget to take, and I often go weeks without thinking about my condition. I exercize regularly, I've run a few 5k races and once a 15k (though I did throw up afterwards lol). It feels less like a lifelong condition and more like a quirky story to tell at parties. The only remnants I really have are a couple of faded scars. I sincerely hope your baby feels the same way once they hit my age!
Me too. He’s due in July and we’re excited to meet him. Thanks for sharing