Lucy Posted March 1, 2013 Share Posted March 1, 2013 Hi! We are looking at a referral to adopt a child with a heart defect. It doesn't give us any details, just says "hole in the heart." No label of vsd or asd or pda or anything. He is growing well, no surgeries or anything yet. Those of you who have kiddos with a heart issue, can you share your story and tell me what to even ask the orphanage? :) Quote Link to comment Share on other sites More sharing options...
melissad2 Posted March 1, 2013 Share Posted March 1, 2013 I think that it is going to vary widely depending on the type of defect. My son has pulmonary valve stenosis that was repaired at birth. We follow up with his dr every other year. You would never know he has a defect unless I tell you. Quote Link to comment Share on other sites More sharing options...
RebeccaS Posted March 1, 2013 Share Posted March 1, 2013 I agree with the above. Heart defects can vary so widely. My 2dd had an ASD that closed on it's own-we just monitored it. My 1DS had a AV Canal defect (2 holes) that required surgery at 2 months and we went through a host of other issues (eating) along with it (probably not related just bad luck). DD has been cleared-no more following up and DS follows up every other year now (woohoo!). He also has a mitral valve prolapse that we keep an eye on, but not a huge deal really. ETA: You really need to ask the orphanage the exact heart defect. Then, you can go from there. Quote Link to comment Share on other sites More sharing options...
KarenNC Posted March 1, 2013 Share Posted March 1, 2013 Agree with the above. My daughter had a PDA that needed repair (many close on their own, hers didn't after being monitored by the pediatrician for a while). It was an outpatient situation where they used a catheter to go up and put a coil in to plug the hole so the muscle can grow over it. This was about age 9 months, IIRC. There was, I believe, only the need for one followup with the cardiologist to make sure it was properly in place, then no more issue. It was supposed to close at birth, it didn't, they closed it, end of issue. The only long term effect has been that we will need to be sure to tell the doctor about it if something like an MRI is suggested, so they know and can make appropriate decisions. Quote Link to comment Share on other sites More sharing options...
AnIslandGirl Posted March 1, 2013 Share Posted March 1, 2013 I have a good friend who is a CHD survivor. He is very involved in a few organizations and I see him frequently post on Facebook. I'm not sure if you've already seen these groups, but they are.. https://www.facebook.com/itsmyheart https://www.facebook.com/TCHIN.org https://www.facebook.com/heartcenter Quote Link to comment Share on other sites More sharing options...
NotSoObvious Posted March 1, 2013 Share Posted March 1, 2013 Weird. I just happened to come across this blog today. Not sure if it will help, I just remembered you had asked... http://www.blogher.com/frame.php?url=http://feedproxy.google.com/~r/CorasStory/~3/MbLXfBXPEnU/ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.