Shauna - posted on 04/30/2009 ( 2 moms have responded )
2
14
I am 6 months pregnant (due August 7th, 2009). My husband and I just found out 3 weeks ago that our daughter will be born with 3 (possibly 4) heart defects...DORV, VSDs, and MVS for sure.
It's nice to be a part of this community that can relate to our struggles.
Thank-you.
Shauna
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Laura - posted on 06/15/2009
7
24
My daughter had a complete AV Canal Defect and we did not find out until they took her to the NICU right after birth for turning blue. She had her surgery when she was about 2 months old because she was losing weight and had no energy. After surgery she still had a NG (feeding) tube until she was 6 months old. It was a difficult time, but to look at her now you would never know it. She is 14 months old and we are not having any problems. Everyones experiences are different, but we did have a very positive outcome. Stay strong, we live in a wonderful age where our children still have a chance to live a full and healthy life.
Anita - posted on 06/09/2009
17
0
My son was at home with us for 5 weeks before we knew anything was wrong! He has hetrotaxy syndrome, very rare! his organs all mirror imagined so what should be on left is on right this includes his heart. He has many heart problems which include TAPVD,right atrial isomerism, bilateral SVC, complete AVSD mild, hypoplastic LV, severe pulmonary stenosis and confluent pulmonary arteries. His doing GREAT, wouldn't swap him for the world. It amazing what they can do now. They're amazed my son lived at home for 5 weeks without beind diagnosed, THANK GOD! Due back for surgery next Monday feel sick! but it has to be done.Stay strong!!!
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