Hypoplastic Left Heart Syndrome

[twinmomma]

Hello ladies. Anyone out there with a child that has HPLHS? I'm 31 weeks pregnant with twins and my baby boy has it. The surgery is not available in our area so I'm worried about leaving my other baby behind. Because they are twins and I've had a cerclage, they are likely to be born early to where she will need to stay in the NICU while he heads off to surgery 12 hours away. Obviously I can't let him go off on his own, he'll is expected to stay around 1 month at the hospital after surgery. This is going to be very complicated. I wish I could find someone that has gone through something alike so I could ask them what they did. I really don't want to leave my baby girl! After all of the crap I've been through to get to this point the only thing I want is to be able to take my baby girl with me to where my son will be.

Anyway, I was also wondering if anyone knew anything about babies born early with HPLHS. I'm wondering how far along I need to get in my pregnancy to give him a decent chance at the surgeries. I know if he is too small he won't make it through the first surgery. Also I'm looking for a good support forum or website for parents that have childern with HPLHS.

 

[jlincoln30]

Hello! I do not have twins but I do have a 2 1/2 year old daughter with Hypoplastic Left Heart Syndrome. My daughter was born at 37 weeks and 2 days, so barely full term and has always done really well. She has had 4 open heart surgeries and is doing very well. Her last surgery was almost one year ago and she is doing amazing. You would never know if you saw her that she had a special heart- her life is just like any other 2 1/2 girl. The only difference in her schedule is she takes 2 meds, twice a day, one in the morning and one at night. Feel free to look at our family website (it won't allow me to put in the link put if you Google search "Aly Jeans Special Heart" it should come up).
Also, I am part of an organization called Sisters by Heart. We are a group on HLHS moms whose goal is to offer support to newly diagnosed HLHS families. Please see our website if you google Sisters by Heart or search us on Facebook. We have a care package we send out to newly diagnosed families and would be happy to send one to you.
I know how scary everything is right now for now- I remember being in your shoes. There is so much hope for HLHS kiddos and my daughter is proof that these kids can live a normal happy life. Please feel free to contact me!