hypoplastic left heart syndrome

Melissa - posted on 05/21/2009 ( 12 moms have responded )

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Hi my son dion is 8 yrs old and has hlhs, he is doing really well at min and had his fontan september 08,

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Wendy - posted on 07/15/2013

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My son Andrew Solis has HLHS, has had 4 open heart surgeries. He will be 13 years old this August. His new cardiologist has told me there is a complication that his heart has not been pumping as strong as it should. They've increased several meds and we're hoping for a good outcome. I have been praying to to have my baby around for a very long time..god bless our special children.

Donna - posted on 02/20/2010

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hi my little girl (well she aint little anymore) shes 12 and starting senior skool very soon .....shes got the same as ure little 1 HLHS shes walked ,talked just like any other child nothing has held her back if she wanted 2 do sumthing nothing has stopped her!!!......shes an excellent swimmer ......shes not very tall but that doznt bother her.
take a day-by-day i woz like you i was 19 yrs old when i had chloe just like u i woz devistaed i didnt ave a clue wot woz wrong i found out at my 21 week scan the hospital ave bin great 98 she woz born 2 days old she had her first op then 11months the second op then when she woz 3yrs old she had her third op shes on medication apart from that shes bin a lucky,brave and very strong little girl ......ive never wrapped up in cotton wool u just cant its very hard .......i hope this is any help 2 u if u ever want a chat add me on ere or find me on fb x

Donna - posted on 02/20/2010

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hi every1 my daughter is 12 years old this year shes got hypo-plastic left heart syndrome im in england shes under evalina childrens hospital in london shes doing well now shes bin diagnosed with asthma but shes fit and well xxx

Kim - posted on 11/19/2009

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My Son turned 11 yesterday!!! Is is doing excellent! All of our care is @ Boston Children's

Deborah - posted on 10/07/2009

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Thats great to hear that your son is doing good. My son is 6 years old and has HLHS. I have made a group under Hypoplastic Left Heart Syndrome. You all should join.

Jessica - posted on 10/05/2009

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Hi there Kylie. My son, Joey, was a very slow learner on everything he did. He didn't sit by himself until he was 9 months old. He did the army crawl with his elbows (his legs and feet followed behind him like a snake, lol) until he was almost walking. He didn't walk by himself until he was almost 18 months old. Joey is in the 5th grade this year and he is almost up to grade level with his reading and math. Joey has been involved with Early Childhood Intervention places since he was 8 months old. They worked with him on physical therapy, speech therapy (after he was talking at about 2 yrs old), everything for him. He has also had 8 open heart surgeries due to some complications with the glen and the final stage of the Norwood procedure. He goes in for his yearly check up every year right before school starts and does his stress tests with the cardiologist so that he can play sports. Yes, he loves to play sports. His favorite are basketball and soccer. He is small for his age, but he seems to be ok with it. He knows why. We have talked about it many many times. I have never treated him like he is any different then any other kiddo in the world. I have always told him from day 1 that he can do anything he puts his mind to do.

All my friends and family thought I was crazy to take pictures of him right before and after each and every surgery, but I'm so glad that I did cause he is at the age now where he wants to see what he looked like after a surgery and now he wants to know everything! I have always been up front with him from day 1 as well, never sugar-coated anything he has ever asked about his heart defect. He is a survivor for sure! As is your daughter. We also have a caringbridge site at www.caringbridge.org/visit/johngrable where you can see updates on Joey as well. Good luck and I'll keeep Jessica in my prayers.

Kylie - posted on 10/04/2009

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Hi, I have a 8 month old daughter, Jessica, my world who also has HLHS. I was devastated when I heard what she had (mostly because I've never heard of it in my life!). Though she has always been doing good... well since a month after she has been hospitalized (they didn't catch it until it was almost too late) I have always wondered what the future would hold for her. Just reading your stories and hearing how old your children are (4,8,12!!!) really has given me more hope then I had before. I have never got to hear anyone elses stories and it really made me feel better to know that there are more children in the world with what Jessica has, that are doing very well for themseleves. My daughter had the norwood back in Feb. and then had her glen at the end of may. I was just wondering if your childrens devolopment was slowed down and by how much. Jessica can finally sit up... thats it...lol.

Jessica - posted on 09/14/2009

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Hi Tanika, my son was almost 2 days old and was about to be released from the hospital when we found out he had a "heart murmur". I tried to breast feed him 1 more time before leaving when he arched his back and his whole body turned purple. The nurse was concerned and got the doc right away. From that point he was put on 100% oxygen and taken to the NICU. That hospital didn't have any clue as to what was happening so he was rushed to another hospital that could handle his "issues". I didn't get to go with him. I was bleeding so bad still from having him. Once I was with him at the other hospital we found out he had HLHS. He ws given a less then 5% chance to make it throught the first surgery. We decided to try anyways. I just couldn't give up. I'm so glad that we pushed for the surgery cause now he is a 5th grader and a very active almost 11 yr old (Sept 21st he will be 11). He also didn't just have the non-exsitent left ventricle, he also had some under developed parts of the heart as well. The aorta only had 1 side instead of divided, the pulmoary arteries were very small, and 2 other valves that didn't work as well (forgive me but I can' remember the name of them off the top of my head).

What is your son's name? I will be praying for him. Joey's last surgery was on Sept 24th, 2002. So sorry for the long post, I have a tendency to babble.

Tanika - posted on 09/14/2009

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CAN I ASK YOU A QUESTION . HOW OLD WAS UR SON WHEN U FOUND OUT ABOUT HIS HPLH AND WHEN DID HE HAVE HIS FIRST SURGERY. MY SON WAS ONLY TWO WEEKS WHEN HE HAD HIS FIRST SURGERY. I FOUND OUT AS SOON AS HE WAS BORN .MY SON IS GONNA HAVE THE GLEN ON SEPT.24,2009 . THANKS

Jessica - posted on 09/07/2009

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My son, Joey, also has HLHS. He will be 11 yrs old in little over a week. He has had 8 open heart surgeries. He had his 1st Fontan done at the age of 2 but had complications and had to reverse it back to the Glenn. The 2nd atempt of the Fontan was the day before his 4th birthday with 3 extra emergency surgeries over the 2 days following due to complications. He is doing pretty good now. He does still turn purple/blue in the lips, fingers, toes, and legs when he's cold and tires really easy. His sats are in the 80's which is good due to the altitude we live at. Good luck with Dion. GOD BLESS all of you.

Amanda - posted on 08/08/2009

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Just wanted to say hello. My son also has HLHS and is doing very well. He just turned four on July 15 and had his Fontan last Aug. 19. I feel so blessed to have him in my life!

Linda - posted on 07/09/2009

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My daughter also has HLHS and is now 12 and doing very well. She had the Fontan when she was 3 years old. She was hospitalized for 2 months after Fontan- very rocky- lots of complications, but the only complication she has had since then is SVT due to scar tissue which is now controlled well with Atenolol

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