Healthy Children after Hypoplastic Left Heart Syndrome?

[SabSully]

The common perception among pregnant women is if you make it past your first trimester then chances are everything is okay and you can start spreading the happy news.  My husband and I were elated when I became pregnant with our first child.  Unfortunately, during the second trimester structural ultrasound it was discovered that our precious child has HLHS.  In the future, we certainly will wait until after the second trimester ultrasound before spreading the news as now we are having to deal with sharing the dreadful news with our friends and family.

The pediatric cardiologist did not paint a positive picture about the prognosis of our child.  We are of course struggling with which course of action to follow.  My concern is, what are the chances of our having another child with a congenital heart defect?  Has anyone go on to have healthy children after having a child diagnosed with HLHS?  

We waited a long time to start having children in order to make sure that we were secure financially, in our relationship, and totally at ease with the prospect of making a lifelong commitment to a child.  Now, I am 37 and I am worried that I have lost out on my chance to have a family.

[kannichen]

Hi there!
Your post was a few weeks ago so I'm not sure where you are on your decision making process but I just thought you might like to hear about my little boy.

Zach has HLHS plus a few extra add ons. He almost didn't qualify for surgury as his aorta was so tiny and he has additional problems with his tricuspid valve BUT the decision was made to go ahead and we are so very thankful. At almost 2 Zach has had his up's and down's but he is full of energy, he goes just as fast as his *normal* brother. Seriously this child is the energiser bunny. (He does compensate by just stopping every now and again and lying down on the floor but moments later he's up and going again).
Zach has reached all his developmental milestone within very normal perimeters and he is just the happiest little thing, I love him to bits.
It hasn't been the easiest road and I'm sure we still have a lot of battles to go through but as I watch my 2 boys playing together now I wouldn't have it any other way.

All the very best- my heart goes out to you and your family
Sarah
New Zealand

[rdh1981]

My first son was born with HLHS last June.  He underwent surgery when he was 2 weeks old but we had problems with his shunt.  So, they had to repeat the surgery several times. Sadly, my little Cooper passed away when he was about 7 weeks old. It was not HLHS that took his life, it was an infection from everything that was going into his little body.  

Cooper blessed us with a healthy little brother four months after he passed away. I just gave birth to his very healthy little brother a month ago.  So, yes you can have a healthy child after having a HLHS baby.

Just remember there is an 85% success rate. While we were in the hospital we saw many healthy hypoplas babies/children succeed!!! I know you are stressed about the finical part of it, but believe me the hospital will work something out. We had a 3 million dollar  tab by the time we left. Thank goodness we had him doubly insured.  

I will be more then happy to talk to you about anything if you have any further questions. Please do not let what happen to Our Little Cooper scare you, believe me the success rate is greater then you think!!!!! I would do it all over again if I had to, just knowing that we did everything possible for him brings me comfort.  

Keep your chin up and keep smiling because you are carrying a very special little baby inside of you!

Rachel