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HLHS anyone?
Just looking to see if anyone here has a baby or is pregnant with a baby diagnosed with Hypoplastic Left Heart Syndrome (HLHS)?
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Re: HLHS anyone?
Hello! My name is Angie, and I'm having a little girl. It was first thought by the perinatologist during our 2nd anatomy ultrasound that our girl had HLHS. After 2 echos, it was discovered she has a multitude of different congenital heart defects, including VSD/ASD, double-outlet right ventricle, transposition of the great vessels, and a hypoplastic left ventricle. Even though she doesn't have HLHS, her only treatment is the same 3-step surgery to make her heart into a one ventricle pumping chamber to the rest of the body.
This diagnosis was completely shocking and devasting to myself and DH. Why would God bless you with a pregnancy only to make your small innocent child incomplete? To not have a whole heart, and to never HAVE a whole, normal heart. To possibly not have a normal childhood, to have set backs, to not be able to do things that healthy children can do, to go through all this and possibly not make it to his/her teens, or to even need a heart transplant. Granted yes, modern medicine is amazing, but at what cost to the child or the parents' lives involved. Yes there are good/bad outcomes in every aspect which makes decisions hard b/c you can't predict the future.
My DH and I have gone back and forth on things, have talked to cardiologist/surgeons. We just recently found out she's not growing properly and only has one kidney which makes things more complicated. We just don't what else is going to be found when she's born, and it's scary/sad/nerve-wrecking. Let's just say it's difficult to enjoy this pregnancy when you know there are things seriously wrong
This is getting long-winded, I'm sorry. Ultimately you and your husband are the parents and have the final decision. Don't let anyone sway your decision b/c your are doing what's best for the both of you and your child. Take one day at a time. I kinda know what you r going through.
Hi,
I saw you post a few weeks ago about this and paged you on another board, but you probably never read it. Here's a c&p of what I wrote.
Hi,
I just saw your post about your son diagnosed with hypoplastic left heart syndrome. My nephew was diagnosed with it as well and went through all 3 surgeries. He just celebrated his 9 year old birthday in March! I know all the emotions running through your mind. My brother and SIL got connected to a HLHS support group and to have really been involved. It helps at the beginning to connect with other parents. It's really hard at the beginning, not going to lie. He was in the hospital I believe the first 6 weeks of his life. Immediately after birth, he was put on life support until a few days later his first surgery. The first 3 months were hard until the next surgery. He breezed through that one nicely and I think only spent a week or 10 days at the hospital. His next surgery wasn't until about 2 years old. He did great. I'm so proud of him (not only is he my nephew but Godson). I spent many long hours at the hospital so his parents can go home and get some rest. I was the only one allowed to babysit him at the beginning between surgeries (trained at CPR and just really involved with all his surgeries and life inbetween).
He's my little buddy! He embraces his heart condition and understands it now. He plays baseball and loves it. We don't know what the future holds for him, but we are confident with medical advancements. He's probably going to have to have a pacemaker put in about a year from now. That's no big deal they assure us. In his early 20's, he'll probably be a good candidate for a heart transplant. But medicine is always advancing, we'll see what comes up next!
I'm glad to hear you are at a top notch hospital (make sure you deliver where they want you to deliver no matter how inconvenient it is for you, you don't want your little boy to be airlifted away from you.)
I also know of another woman who has a son born with it. He is now 4 years old and also doing wonderful.
I know you don't know why or how God picked your little boy to have to go through this. I think it's normal to question that. Our family did. Remember, he's special (I know, all kids are). But he's really a special boy and he will advance just fine through life.
Hang in there, seek support when needed. If you have any other questions, feel free to page me!
www.teamtravis.info
Just take one day at a time, it's all you can do. My brother mourned a bit about his son not being able to be the sports star he hoped for. Your husband has a right to mourn that part. But your son will find his nitch. I don't know how long my godson can play baseball for, but he's very good (his team elected him to allstars this past year!). I'm sure when it gets too competitive, he'll have to stop. My brother and SIL are trying to turn him on to golf, playing an instrument, etc.
You are right though, at this point just focus on the surgeries and getting through that. Make sure you are at the best place for your son. You will get through this. Maybe speak to a social worker at the hospital that can connect you with some support network.
Keep me posted!
Angie,
Thank you for sharing your story. Where will your daughters surgeries be performed? What are your plans for our work....are you taking off indefinitely?
It is a tough time for us all. But I'm trying to see the hope in it all...
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Hi - my daughter was diagnosed with Critical Aortic Stenosis and Severe Mitral Regurgitation. The left side of her heart was not pumping. Her heart was on it's way to becoming Hypoplastic. We were able to have in -utero surgery at Children's Hospital Boston to save the left venticle, but we weren't able to save her valves. Her valves are really bad. Although she's not technically a hypoplast, she's considered one b/c her left venticle doesn't work properly. She will not need the Norwood, but she does need at least 3 open heart surgeries to try to fix her valves. Her disease mimics HLHS,so I understand completely what you are going through. A good friend of mine is having a little boy next week with HLHS. Crazy. The surgeon told her that there is no reason NOT to think that he will be the little boy they've always dreamed of having. He gave them alot of hope. Good luck to you!
Our first child actually was born with HLHS but she had many other problems. I wish your family lots of luck and healthy vibes.
There is a yahoo group for parents of kids with HLHS, I joined when I found out our diagnosis and it really helped alot because most know exactly what you are going through. Here's the link
https://www.hopeforhlhs.com/index.html
https://health.groups.yahoo.com/group/hopeforchildrenwithhlhs/