My daughter has to have a heart transplant & shes 1 1/2 months old...?

She was born with hypoplastic left heart syndrome and pulmonary valve stenosis and aterial septal defect, her condition is so rare that the heart transplant is the only fix.... anyone have children who have had transplants at such a young age and shes a preemie 5.3lbs and 18" long....

HI there! My 7 year old son has Hypoplastic Left Heart Syndrome, Left Pulmonary Artery Stenosis and Hypoplastic Left Lung. He had the "Norwood Proceedure" and has had 4 open heart surgeries. He is in 1st grade and doing wonderfully!

If you are interested, I started an online group for parents of HLHS children (www.hopeforhlhs.com). We have over 700 members now from all around the world.

Wishing you the very best,

Shannon Tercheria
Group Owner and Proud HLHS Mommy

That must be so hard.

Two of my cousins - on different sides of the family - were born with severe problems with their internal organs. One was born with her intestines on the outside of her body and one was born with her internal organs pushed far up into her lungs so that breathing and other processes were impossible. I'm not sure that she required a transplant, but extensive surgery was necessary the very day she was born and she spent the next 1.5-2 years in the hospital. She turned out just great, though! (The first one's complications were much less severe). To be noted - both kids had a hard time eating when they were very small and have failed to thrive since then, but at such a young age, it is very possible your baby will be fine. Good luck.

Hello,

My son was born with HLHS also and is now on the heart transplant list. He is 2years 3 months old. There is a group on yahoo that can really help you out. Check out their website at hopeforhlhs.com.
Hope all goes well with your little one.

Carrie

I pray to god for your little daughter. I am sure everything will work out fine and good. May God bless her....

I have not experienced this but I would really like to wish you and the bubs all the best.The medical world these days are truely amazing so keep your spirits high and everything will be good.They can even operate on babies still in the womb.All the best.