Marc, born 2012

My third child was born June 5th and he looked healthy as can be. I had a great pregnancy and I never knew my baby had a heart defect. Just one day after his birth, we were getting ready to go home when the nurse noticed my son was bluish. She took him in to the nursery to take his vitals. About two hours later the neonatologist and pediatrician both came in without my baby, my heart sunk. They told me my baby was having trouble breathing and after stabilizing him and running further test, they found that he had Dextrocardia, TGA , Ventricle Inversion with Pulmonary Atresia and a VSD. They told me he would need heart surgery as soon as possible. 

My son had his first open heart surgery by Dr. Kim at The Children’s Hospital of Los Angeles. Great Dr! He had the BT Shunt surgery at 3 days old. He did GREAT and they did not have to put him on the bypass machine. He was in the hospital for two weeks.

 

Today, he is home and if it was not for the scar, you would never know my baby had a special heart. His cardiologist said he can hold off until one year of age for the Glenn procedure. His heart is strong and my baby is thriving, thank GOD.

 

I know I still have a long road ahead of me but I have faith and know God has amazing plans for my baby boy! I would love to connect with any parents whose child has the same heart defects find out how they are doing.

 

UPDATE:  April 19, 2013

My son just went in for his second procedure, the Bidirectional Glenn on March 25th, 2013 and we were home in five days! I was amazed at how fast he recovered. I do have to admit it was harder handing my baby over to the surgeons this time around. I was at peace knowing he couldn't be in better hands. He was put on bypass and had no complications. Surgery was 4 hours long; recovery was very hard for the first 2 days as he had a really nasty headache and his head was very swollen. We were out of the intensive care unit in 3 days and 2 days in the CV Acute unit. He amazes me every day. Two weeks after surgery he was already rolling and acting like his normal self. I'm so happy that we will have a little break before his Fontan. For any parents getting ready for the Glenn, know that it gets easier after this surgery. Kiddos are super resilient.

 

Story by Marc’s mom, Jen – California