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Vanessa - posted on 11/25/2008 ( 2 moms have responded )

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Hello. My son was born with Hypoplastic Left Heart Syndrome. He had his 5th open heart surgery in July. He will be 4 in January. When he was born everything seemed fine . At about 7 weeks he was very blue and was life flighted to St. Louis Children's where they saved his life. Now he is the most active little boy I have ever been around. He goes to Pre-K and had gained 7 pounds since his surgery on July 23rd. It was nice to find this group and I am hoping I can find people that can tell me more about HPLHS and their experiences. We have also been told that my son has Double Inlet Left Ventricle and Ventricle Inversion. The doctors told us it is rare and after surgery can be called a couple of different things. Has anyone ever heard of this?

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Megan - posted on 01/01/2009

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Hi Vanessa, I'm expecting my second son this April 2009 and learned at my 17 wk ultrasound that something was not right with his heart. We were referred to a pediatric cardiologist and were told that our son has HLHS. Since we received this diagnosis, I have been online trying to connect with others that have children with this condition.

TNell - posted on 12/16/2008

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Hello. My son also has HLHS. He is 2 1/2 years old and has two surgeries and is waiting for the third in this series. We were fortunate enough to find out before he was born and he had his first surgery at six days old. He is doing well but we are having a hard time getting his weight on as he has his father's metabolism. (That will be good when he is older I'm sure, but for now it's a bit frustrating when we are trying to get it up! lol) He is very active and tries to keep up with his older sisters, getting frustrated when his condition slows him down at times. I am not sure what the Double Inlet Ventricle and Ventricle Inversion are but I can probably find out. I will let you know when I do... I hope you guys have a Merry Christmas! Also, do you have any suggestions on how to prepare him for when the next surgery comes? Now that he is older he is showing the tramatic experiences again and hating every doctor's visit, even the nice visits! Thanks!

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