Really, the answers to your questions vary from child to child.
Where are you planning on having the surgeries done? Studies have shown your child will have the best chance of not only survivng, but thriving, if you go to a facility that routinely does pediatric OHS. I would insist one of the better Children's Hospitals.
If surgery goes well and you have a good medical team, quality of life is good...as close to "normal" as you would get, except for meds and some physical restrictions.
Longevity is not fully known since the technique of fixing these complex issues is still around 20 years old, but from what I read, the numbers keep improving.
I have a friend who has a 5 year old with HRHS and he runs, plays, goes to school, etc.
If you did not personally know him, the only way you would know about his cardiac condition was if you saw the scar on his chest
My fieance has had all of those and he is 30 years old. his surgeries were done at university of Michigan hospital. He had 1 surgey when he was 6 days old and the fontan when he was 5. The surgeon is Dr. Edward Bove. If you have any questions feel free to message me or email me at dance_extreme2005***@****
good luck with your baby
Hi! I see you posted this almost a year ago, but I just joined so thought I'd reply. My son is almost three and had his fontan surgery last April. He has also had his shunt and glenn as well. He also has the hypoplastic right heart.
It is a very worrisome and tramatic situation to deal with, but with technology and support today, the overall outcome gets better and better. Jett (my son) is doing great and we could have never asked for a more wonderful little boy. His energy surpasses mine by a lot and his size (generally 'heart babies' are smaller) is in the top 100 percentile.
I sure hope all is well with your little one so far. The only problem we did have with the fontan was fluid in the lungs. About 1/2 of the kids do end up getting that and Jett was one of them. We were in the hospital an extra week due to that. He had to have an extra tube to drain the extra fluid. They also found a small piece of tissue they had to fix and a narrowing artery so he had a few other small things to fix while the fontan was done. It's amazing what the surgeons can do.
I did read in your question, you had asked about quality of life. Jett really has no limitations other than later on, he will not be able to play contact sports. He loves music so far, so I'm hoping he sticks to that!
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