Hypoplastic Left Heart Syndrome

Lindy - posted on 03/08/2009 ( 4 moms have responded )

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Does anyone else have a child here with Hypoplastic Left Heart Syndrome?

4 Comments

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Kayla - posted on 04/21/2009

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My little one, Oliver has HLHS. He's 8 months old now and doing amazing. He's had the Norwood and Glenn and did great with both!

Heather - posted on 04/20/2009

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I have a 12mth old with HLHS. He has had two of the three Norwood Series but has had 5 open heart surgeries, 7+ days on ECMO 2 times, two amputations, 4 cardiac caths, and lengthy hospital stays because of infections, etc. He has overcome a lot not counting the heart issues, he had become very drug addicted and that was one of the harder battles. He is developmentally at a 6-7 mth old and I could not be more pleased. He is truly an inspiration as all of these babies are. I feel that I am very fortunate to have my son the way he is and I look up to the other families of HLHS with great awe and admiration as I know how much harder this could have been and could be.

Christina - posted on 04/19/2009

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Yes, my daughter is 19 months and born with HLHS as well. She has had 2 OPS and is doing very well.

Claudine - posted on 03/08/2009

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Yes, I do.  Her name is Carly and she will be 9 in May...she has a fraternal twin sister who was born heart heathy.  She had all 3 of her surgeries done at CHOP...we live in NJ.  Please share your story....it is always great to meet other parents going through the same thing.  Do you belong to the TCHIN online support group for HLHS??  If not, it is a wonderful thing...

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