Do any of you have a child with Congenital Heart Defects? I just had a son in July who had Critical Pulmonary Stenosis, and was looking for someone who might have gone through some of the same things. I am anxious about long term affects, and worried about how this could affect his life... Any thoughts would be appreciated!
Thanks for the support.. I should have mentioned that James had a balloon valvuloplasty at day 4, and he may need one again as his heart grows. Thanks for the support! It is nice to have people I can contact should the need arise!
My 9yo little girl was born with Atrial Septal Defect and Dextracardia, so I kinda know what you're going thru. She had open heart surgery at 2 years old and is doing great. If you'd like to chat on the phone about some more of the details (too long to write everything out, plus you can ask me q's), feel free to call me, ###-###-#### :}
Hi A.,
I have walked through open heart surgery and many other treatments with my second daughter, who had many heart issues (as well as other things). One of her heart issues was pulmonary vein stenosis. Let me know if you have any specific questions I can help with.
M.
I got chills reading your post. I have pulmonary stenosis. They knew that I would need surgery shortly after I was born. I had the surgery at 3.5 years old. Today, the only effect is a heart murmur. I am healthy, 40 years old and the mother of three. I'm sure a lot has changed in 37 years, but the technology could only be getting better. If they are recommending surgery, take comfort in the fact that children do not remember the pain. It will be harder emotionally on you than on him. I remember lots of attention and little bits of being in the hospital, but NO pain. I'll keep you in my prayers.
Hi. I have a friend in Florida whose son was born with a heart defect. Her email is ____@____.com is a really sweet person. I will email her and let her know you may email her. Good luck!!
K.
A.,
I went through open heart surgery at 8 years old. Mine was for Atrial Ectopic Tachycardia. My son had AV Canal and had open heart surgery for it at 6 months old. I know you are going through a very scary time right now. I was scared to death before time to put my baby boy through that. Well he is almost 7 now and doesn't remember a thing. He had a very short recovery time (about 6 weeks). And his scars are so faint that they are barely noticeable. Do you know if your son will need surgery for his condition? Who is his cardiologist. My son's was Dr Matthew Kimberling. And his surgeon was Dr Renne. Please let me know if there is anything I can do for you. Or if you just need someone to talk to feel free to shoot me a message. Hang in there!!
A. K
