hyperplastic left heart

Tanika - posted on 09/02/2009 ( 12 moms have responded )

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any parents have a child older than 2 living with hyperplastic left heart

12 Comments

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Allyson - posted on 08/05/2012

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Hi my name is Allyson and I have a daughter and she has hyper plastic left heart disease and had a heart transplant when she was just turn one years old and now she is four years old and doing so good

TNell - posted on 08/09/2010

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Just an update from my previous post. My son is now at the point where he is diagnosed Failed Fontan and is now on a transplant list as of last March.. He is still at home, but goes in and out pretty often with the hospital stays depending on his health. I am not saying this to make people sad. I want to mention it so you know that these kids are so unique and special. I wouldn't trade any day of my son's life for him to have been born normal. It defines who he is and he is such a sweetheart! Enjoying every day no matter what and taking one day at a time. I hope your kids are doing well at this point as well! :)

Renee - posted on 07/08/2010

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Hi Tanika My son will be 4 years old in 2weeks HLHS is one of other defects that my son has he also had his 3rd stage fontan on April 2,2010 and is doing great.not going to lie it was crazy for a little with the pain up and walking and with chest tubes but over all these Dr really know what there doing. We just need to take it day by day.I also have 2 other children all 3 are boys 6,3 going on 4 ands a 1 1/2 year old other children are fine.Our CHD children are fighters and amazing.Good Luck to you and your family keep you all in our prayers

Ann - posted on 12/24/2009

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Quoting Jill:

I am so glad I found this group! I am 23 weeks pregnant and my daughter was just diagnosed wiht HLHS. I am overwhelmed and need to hear other mothers' stories.


Hey, Jill my daughter find out that her baby had HLHS when she was pregnant too. I'm not going to tell you it's going to be easy because it's not . But be strong for your baby i dont know wear you live but the childrens hosptial  here were some great doctors my grandson is 18 months we been through some really scared times . She had a boy named Hunter he is a fighter from the time he was born. He has had two surgurys on his heart and the nexy one will be when he's three.. Be strong because God only give these special angels to very special mothers and your one of them.. The baby is a gift from God. If you need too talk me or my daughter would be glad to talk anytime you need too... God Bless..Ann 

Ann - posted on 12/24/2009

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Hey, Tanika my daughter has a son my grandson who is 18 months and has hyperplastis left heart. Hes had two open heart surgurys and his next one will be when hes three.. Do you have a child that has the same thing and how old are they? concerened grand mother...

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I am so glad I found this group! I am 23 weeks pregnant and my daughter was just diagnosed wiht HLHS. I am overwhelmed and need to hear other mothers' stories.

Ann - posted on 12/19/2009

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Hey, Tanika My grandson has the very same thing. He's had two surgurys already and has one more too go. The heart doctor said he would not have it until he is three .He's 18 months and doing great he has been a blessing to are whole family. I love him with all my heart he lives with me for now. He is so beautiful. So if you ever need to talk i'm here and i'm sure my daughter would talk to you also so your not along . If you need to talk were here...Ann the grand ma- nana

Ann-Jeanette - posted on 10/11/2009

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Yep. Ella is 3 1/2 years old. All three surgeries as of May. We also have two older girls in the area age 11 and 15 years old. They are fantastic. Have you joined the Hope for HLHS group on yahoo groups? There are several hundred members of kids with HLHS. Some of the Mom's have kids that are in their 20s.

Heart Hugs,

AJ

TNell - posted on 09/29/2009

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My son just turned three in June. He had three open heart surgeries: at 6 days old he had the Norwood, at 4 months old the Bi-directional Glenn, and at just shy of three years he had the Fontan. He wound up staying in the hospital all summer and just got out in September because of some complications after the surgery and some other procedures that needed done, but he is mostly healthy at this point. In fact, he will be starting his Pre-k in October if he continues to do well.

Tanika - posted on 09/05/2009

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thanks . tes its very hard sometimes . ican always use someone to talk to who can relate in some way

Emma-kate - posted on 09/04/2009

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Hi I have two children one 4 and one almost 2 . My two year old was borne with a congenital heart condition called Tetralogy of fallot he had his firt operation last year at 10 mnt. I was also borne with a congenital heart condition called Truncus Arteriiosus. I am a youth worker for heartchildren new zealand, wellington. Please feel free to contact me if you want to talk or any infro . I know are coniditions are differant but sometimes its nice to speak to other people that understand where you are comming form.

Hope this helps and Take Care.

Emma -Kate Nash

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