Does Anyone Have a Child with HLHS?

HI,
My name is H.. My son was born with Tetralogy of Fallot. This is a right sided heart deffect. He does not have HLHS, but I spent a lot of time in the Loma Linda Children's Hospital Cardiac ICU. You are in for a very hard year. Every baby born with this problem is different. I have seen some thrive. My son had a very hard time, but in now doing well. If you would like, I could recomend the best Peds Cardiologist around. Feel free to ask anything or vent.

H.
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Not HLHS but I am a bit familiar with it. As far as I can remember he will have to have I think 3 surgeries over time, the first one in a few days after birth. You are very lucky that you have this diagnosed before birth as many times it is not caught until after and sometimes by then it's too late. Your doctors will be prepared and your son should be fine after they've taken care of him. I'm going to message you with some more info.

I do not have a child with HLHS BUT I do have a 55 year old aunt with it. When she was born and a child they didn't have much info on it nor was it something they were close to familiar with. Matter of fact, she wasn't diagnosed until she was 17. She has never had a surgery and it now having minor complications that may require surgery but she was fortunate enough to have a good start.

I just wanted to respond to tell you that it is very possible for your son to live a long, happy and healhty life.

Where are you located? I have a son born with Transposition of the Great Arteries and has had OH surgery. I am co-coordinator of a group called Mended Little Hearts and we offer to support to parents and children. We do have families that have children with HLHS so you are not alone. Please feel free to give me a call on my cell phone at ###-###-####. I can get connected with other families with HLHS. My son is 10 now and doing fantastic. You are not alone in this world and we have many parents that share that same feeling as you do. L. Renwick

Hi A... My son was not born with HLHS, but another heart defect.
I didn't know until after he was born. You have time to prepare yourself and read everything you can about this condition.
My son ended up having open heart surgery when he was 5 weeks old. I know it doesn't probably mean alot right now, but it is TRULY amazing and exceptional what doctors can do these days, it really is.
Where do you live, and when are you expecting?

I have a son with HLHS. He is currently 17 months old. He was not diagnosed until after he was born. My child is doing great. My husband and I have been very fortunate, we haven't had any other complications except the HLHS. He came through the first two surgeries great. He started walking at 14 months, developmentally he has caught up well. He is slower at gaining weight then healthy heart kids, but he has packed on the weight, so we haven't had any feeding issues. (We are lucky if he gains a pound a month).

For me when my son was born, they ran all of their tests and then transported him to another hospital. They released me about 12 hours after he was transported. The neonatal unit where I was at was wonderful at letting my son and I have time to bond. He had alot of cords, but they helped me with my fears of holding him (because for me it was intimidating). He was about 5 days old when he had his first surgery. Nothing really prepares you for what you see after they come out of surgery. There are lots of tubes and lots of wires. There was a lot of wires before the surgery too, just a lot more after. My son was pretty much out of it for about 4 days, then they closed his chest and they started to wake him up. It took another couple of days to wean him off of the medications and the pacemaker. Once he was weaned off, they moved him to the pediatrics unit. Then he was there for a few days. All in all he was in the hospital the first time for almost three weeks. Once he was in the pediatrics unit, each day got better and better.

I am not really sure what to tell you. My son is doing great and we have been very fortunate that he has had no other complications. You would never know he had anything wrong with him just by looking at him.

There is a yahoo group that is a good support group called Hope for HLHS. People are wonderful on there!

Feel free to ask me any questions you like.

C.

Hi A.,
Although I do not have a child with HLHS, my best friend did, and she is always eager to share her experience with others and help when she can. She is not signed up on mamasource however, so if you'd like to give me your email, I can link you two together. She is unable to respond on this site. You can email me at ____@____.com, and I will forward it on to her. Her name is Lynn.
Sincerely,
L.

Hi A.,
I know what you are going through. My daughter will be 3 in A.. Her diagnose didn't come until after she was born. We were rushed to UCSF.They operated on her when she was 4 days old. Her first diagnosis was HLHS, b/c all of her left side was under developed, cortation,bicupides, subaortation.Others names I couldn't remember or just cant spell. Everything was thrown at us all at once.Her first surgery was when she was 4 days old. Then 2 angios when she was 2 monthes old. If her heart does this... we will do that . All a wait and see game. Not a great felling.You are not alone it this. There are great support groups. We found Camp Taylor. They have a family camp in May that if free for family with childern with heart desease. All the family blend and we have a wonderful time. kidsheartcamp.org.
They will be a very stessful time, if it isn't already. Lots of dr appointments.
Just remember these are gifts from God and he wouldn't give you more then you can handle.
I am a mother of 3.
We are all here for you. PLEASE EMAIL ME WHEN EVER YOU NEED SOMEONE TO TALK TO.THIS WILL BE VERY HARD.
BTW- how were they able to detect HLHS.I had a 3D ultrasound at 32wks and they said her heard was normal.
T.
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