Baby Diagnosed with HLHS (long)

mamalae

i was born with a hear defect. the main artery to my heart was blocked. i had a Coarctation of the Aorta. major heart surgery! i was just a few days old. Doctors can work miracles now! i was one of the first children to have this type of surgery done. You would never even know i had problems as a baby. it does cause me to have high blood pressure during pregnancy. and they are not sure how to treat it because children that had the surgery are just now at child bearing age. There will always be challenges but doctors can do soooooo much. my thoughts and prayers are with you. * they have support groups in our area for parents with "heart babies". i would check your hospital. that could really hep when you need someone besides friends and family!

Samantha Harlow

My cousin was born with this very same disorder in August of 2007.... He did fantastic during the surgery and when it was over and the anethesia was wearing off he decided he wanted to pull his tubes out! He was released from the hospital in October of 2007, he was only in the NICU when he was first born before his surgery.  After the surgery he was put in his own private room until he left the hospital about 2 months later.  It's amazing how little babies are but how strong their fight is.  Just know that God is watching over you and your little miracle when he makes his appearance.