Get It Down 31 for 21: Post 19

Another friend of mine is also pregnant, and she recently found out that the little boy she is carrying has Hypoplastic Left Heart Syndrome. The c-section has been scheduled, and so the first open heart surgery a few days later. There will be at least two more open heart surgeries after the first one. 

They were told to be really careful with the information on the internet as only 10 years ago most people born with this heart issue died, so like a lot of the DS information out there, it is just plain wrong.

Now, all of you heart parents did you meet someone with this issue when you were in the hospital? Any experience? Anyone else? Apparently, this is a really tricky surgery/condition. Any helpful websites you might know of?

7 Responses

  1. My son was born Hyplast Left heart as well. he is doing good, 2 years old now. He has had 2 of the 3 procedures that will correct his heart. We had the Norwood procedure just after birth, then the Glenn Shunt, we still have the Fontain to go. There are severa things that slowed our coming out of the hospital, but none was problems with his heart surgeries. We hit problems, like respitory and lungs and infections….but we are out and healthy for the most part. He was born with DS so that made recovery and other things an obsticle…but again. Check us out….he is 2 yo now and about to walk. He still isnt crawling, the heart surgeries made his chest muscles slow to grow, but again….we learned early on, Tucker time. (that is my sons name, Tucker, he does it on his time, not anyone elses.)

  2. I’ve heard of this before, but don’t have any resources, oh it looks like someone left you a good link above. Anyway, I’ll keep her and the baby in my prayers.

  3. I just met a woman last week who’s son has that condition. He had the surgeries 10+ years ago when it was still very risky. He is now doing VERY well. She told me about this place: LITTLE HEARTS of Connecticut (USA) http://chdring.tripod.com/hope.htm

  4. My nearly 7-year-old daughter has HLHS. She has had all three surgeries and is doing VERY well!! We have had our difficulties–upper respiratory issues, failure to thrive, and a GI bleed–but today no one would know our daughter has health issues. Please feel free to have your friend contact me–agammon@sc.rr.com. I am happy to send photos and any words of encouragement I can offer. There are a lot of scares and unknowns, but our daughter has been the biggest blessing of our lives. I would highly recommend the support group and web site offered through TCHIN–The Congenital Heart Information Network. http://www.tchin.org
    —Anne

  5. My daughter, Shay, has classic HLHS and has gone through all 3 surgeries. She is nearly 7 and is doing BEAUTIFULLY! We have had our scares and difficulties, but today that all seems like a distant, surreal dream. If your friend’s child is born at a good, experienced center, there is every reason to be hopeful for a good outcome. Please have your friend contact me–agammon@sc.rr.com. I can share photos; I am happy to answer ANY questions. I remember having many dark and scary questions during my pregnancy. There is nothing that is off limits. She is lucky to know ahead of time because she can be sure the baby is born at an experienced center. It is important the hospital they choose not only has a good surgeon, but also has a designated Pediatric Cardiology ICU with an intensivist. Plus, there should be a designated Peds Card step down unit. The care before and after surgeries is as important as the surgeon. Our daughter’s surgeries were done by Dr. Scott Bradley at MUSC in Charleston, S.C. He is very experienced and has an amazing success rate. Two wonderful web sites–www.tchin.org (lots of info, wonderful HLHS support group, plus Portrait Gallery) and http://www.savinglittlehearts.com (check out the surgery reviews from parents).

    Anne

  6. Hi!

    Our son is almost 20 months and he’s post-Glenn (the second surgery). Knock on wood, you’d NEVER know he has HLHS. He’s more active than many of his friends, and while he’s a tad on the small side (still hanging at 21 lbs!), he’s developmentally on target.

    He had his surgeries at Children’s Hospital Boston – they are simply fantastic.

    Please tell your friend she is more than welcome to email me. There IS some scary stuff out there. However, the statistics are amazing and keep getting better each year. Please remind her to pay attention to the dates of the things she’s reading, and also to remember that each kid is different and each heart is different.

    Our son’s site is http://www.babysamson.com – we started it when he was diagnosed at 20 weeks in-utero, so it covers the pregnancy and the first two surgeries – we’re looking at the third this spring.

    Again, please – I’m available by email and by phone if she would like. I remember very much what it was like getting Sammy’s diagnosis and how important other parents were for us. Hope for HLHS (the yahoo group) has been an incredible resource.

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