Hypoplastic left heart

Jaclyn - posted on 03/27/2009 ( 9 moms have responded )

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I am pregnant with twins and just found out my unborn son could have hypoplastic left heart. At this time they are saying his left side is just a bit smaller then the right but he has a hole in his heart to . Has any one ever had to deal with such a thing.

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Kayla - posted on 04/19/2009

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Just be as prepared as possible...the post Norwood pictures are a little heartbreaking, but if really helps you to know what you're going to be looking at! I feel like we're lucky to have known before hand...that way we half-way know what's going on and it's not as much of a slap in the face!! When are you due??

Jaclyn - posted on 04/19/2009

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I am so happy to hear that all your babies are doing well, and it relieves so much stress i have. Thank you all so much for your help and support. Hearing all your stories makes me realize that my son will be ok.

Kayla - posted on 04/19/2009

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Hi Jaclyn,



My son was born with HLHS. We too found out before hand, and it was the hardest thing to hear for us. It didn't help matters that the doctor tried to get me to have an abortion. I found all of my help thru people online who had kiddo's who had the same or similar defects. My son is 8 months old now and is perfect...he had the Norwood at 4 days and did awesome, and had his Glenn at 6 months and did great with that too. If you look at him you can't tell there's anything wrong with him. He didn't have any issues with anything through-out his surgeries or hospital stay besides feeding. We were there for 7.5 weeks because he had nasty reflux. It helped me a lot to look at other peoples pictures. I don't have many pictures on here from his surgeries, but my myspace page is full of them. Feel free to check it out.. www.myspace.com/kaylamarie323. I wish you the best of luck and if you have any questions feel free to ask! I'll try to help you out as much as possible!!

Lori - posted on 04/17/2009

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My daughter Hannah had all 3 surgery's. Her first one at 2 days old. Her second one she went home 3 days after.

Lori - posted on 04/17/2009

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My little girl is doing great. You would never know that she has a heart defect.

Lori - posted on 04/17/2009

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Hi You do not know me, but I have a little girl that will be 5 on April 19th. She was born with Hypoplastic left heart . You can e-mail me at any time with any questions.
Lori
lorri4121176@yahoo.com

Jaclyn - posted on 03/30/2009

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Thank you both so much am sure you know what it means to know others were where you are. I am so happy that both your children are doing good. I hope we have as much success as you both, Thank you again for your support.

Karla - posted on 03/30/2009

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Hi...my name is Karla, I'm 19 years old, and my daughter was born with HLHS.  She is 5 months old and is doing AMAZING!!!  She has had 1 open heart surgery so far... two more left.  She had her norwood when she was a week old, she will have her Glenn sometimes this summer.  Although we have been through some very difficult situations (cardiac arrest, low blood pressures, etc. etc).... She is doing AWESOME.  You can't even tell she has a heart defect.  Shes not on oxygen, no feeding tube,.... but she is on about 8 different meds.  We have been through alot... and still have a long road to go, but everything has been well worth having Sasha here with me.  Seeing her smile everyday is the best thing ever.  I like to have other heart families as fb friends, so feel free to add me.... Karla Alvarado

Elisa - posted on 03/28/2009

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I just joined this group tonight and wanted so share my thoughts with you, My son Justin will be 3 in May and has HLHS. He's had 3 open heart sugeries. The first was when he was just a day old, his 2nd when he was 6 months old, and he has his 3rd and final stage in February 2008. We've definately had diffcult times as I also have a 4 year old.  He's had a couple other issues such as his spleen being taken out and we're being evaluated for a liver transplant. He does wear oxygen 24/7 but if he didn't have it on everyone would think he was normal. I know he won't be an athlete by all means but I wouldn't trade him for the world. I have to get pictures loaded into facebook since i'm fairly new but I hope this helps you out. Elisa

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