Possibility of having 2nd child with HLHS

We just found out we are 6 weeks and 1 Day pregnant and we are so excited but yet scared.  We lost our first born Parker, a year ago...He was born January 23,2007.  At a routine 20 week check they said he had Hypoplastic left heart syndrome.  He passed away at 3 days old.  My husband and I are wondering the percentage of having another child with a congenital heart defect.  Any information would be great.  Thank you!

Corey and lacey

[alovesz]

Hi. I know you posted your comment/question about another baby having HLHS awhile ago. I just thought I had some information you should be aware of, incase you haven't found it in your own research yet about Hypoplastic Left Heart Syndrome. My husband and I also lost our baby to HLHS recently, and over many months I did an enormous amount of research. I hope all is going well for you in your current pregnancy. I know many doctors usually tell you to go ahead and have more children after a HLHS baby. But, the recent information clearly shows risks to future offspring are higher. I am sure you know a lot of this already and decided to take your chances anyway, as many couples do. But, left-sided congenital heart defects, ranging from the not so severe to the very severe like HLHS, do tend to run in families. According to a study published Oct. 2007, it says that the sibling recurrence risk is 8%, or 1 in 12 chance of HLHS, and 22% of some other cardiovascular malformation. Also, whether they do or not, they carry the chance for heart defects to future generations. Anyway, I am sure you are aware that HLHS is heritable, with familial clustering. Have you and your husband had echocardiograms performed on your hearts to check for asympomatic heart defects? The latest information highly suggests all first degree relatives of HLHS babies do this, as there is a higher chance that other siblings or parents might have something, the most common being BAV. My husband and I did this 6 weeks after our son, and unfortunatley they found the link of our sons HLHS, as my husband was found to have a Bicuspid Aortic Valve. We never knew he had this congenital birth defect, and wouldn't have known unless something went wrong. We will have to have him checked and do other things the rest of his life. So, I strongly believe in having your hearts checked if you have a baby with HLHS or other left-sided heart defect. Anyway, if I were you I would make sure to have them check extra good this baby you are carrying. The odds are still in your favor, and I sincerly hope all will go perfectly for your family this time around. I know you have been through so much already. Best wishes to you!

[reedsmommy]

Hi Lacey,

You have probably had your baby by now. But I just wanted to say that we went on to have 3 more children, all with great hearts, after we lost our son to HLHS in 1993.
I pray for you to have a healthy family!
No one should ever have to go through something like this once, much less twice!
Hope your new baby is perfect!!!
Reedsmommy

[Salpyk]

Hi Lacey,

My name is Salpy and I too lost my baby to HLHS.  We want to try again but I'm so scared.  I'm sure you already had your baby so I wanted to hear from you.  Please let me know how your new baby is doing. I pray it's a healthy baby.

My email is ***@****.  

Thanks,
Salpy

[andre94]

Hi Lacey & Corey

I admire your courage to go ahead to have another baby after your HLHS child.  I lost mine recently as he turned 15 years old.  Medically he is considered a miracle child as no srugery was done since his birth and his condition was left to manage on his own, and on our trust in God.

I have 2 other beautiful girls who are Andre's best friends for life.

No one should ever go through a second time of having a HLHS child....God is merciful.  Trust and believe that your baby will be fine and healthy and he/she will be.

Good luck and congratulations!

April Tang
Singapore