Wow, do I have the oldest heartbaby here? I guess after 7 MDC years, I shouldn't be surprised, huh
Ds is 12. Like the previous poster, he has HRHS. Ds was born at home, and diagnosed 12 days later. He had his first open heart (BT shunt) at 2 weeks old, his second open heart (Bi-Directional Glenn) at 12 months, and his last open heart surgery (scheduled for a fontan, got a partial repair instead) at 4 years old. We were extremely fortunate, all things considered, in light of his original diagnosis. He has had no long term complications from surgery. His heart function is very good, and while he isn't a physical kid, that is probably more from hypotonia (see my first thought below) than his heart issues.
A few thoughts--
1) A few people mentioned some gross motor delays in their posts. I urge those parents to have their babies checked for hypotonia. Do not ask the cardiologist, they are clueless. Push for a referral to a physical therapist and have an evaluation with an expert. I have a growing suspicion that a lot of heart babies are permitted to remain delayed for years under the belief that they are 'just behind from all the surgeries' or 'just not very active kids because of their circulation'. I think in some cases this is congenital hypotonia, which they will never outgrow. The best treatment is physical therapy as early as possible.
2) We avoided a lot of playground teasing (lots of heart kids are just not as 'physical' as their peers) by teaching ds to simply give other kids factual information. "I've had open heart surgery 3 times. If you had that done, you wouldn't run so fast either." Usually, kids respond well to matter of fact explainations. Socially, ds hasn't been delayed by the heart issues--it's a blessing really that we live in an electronic era, and most kids are more than glad to bond over computers, video games, and the like...
3) I still glance at ds every morning to watch his chest rise and fall while he sleeps. I still have to reassure myself he is breathing, he is alive, he is well. You never get over it. Ever.