Kellen, born 2010

We found out when I was 28 weeks pregnant that our baby had Hypoplastic Left Heart Syndrome.  I will never forget that day when our whole world came crashing down and we were devastated. The diagnosis was overwhelming and all I wanted to do at that point was find out as much as I could about HLHS and find some stories of hope from other families.  I knew for some reason this was meant to be and we were chosen to be Kellen's parents so that we could give him the extra special care he was going to need his whole life. Fortunately, we live close to the Children's Hospital of Philadelphia, so there was no question that Kellen would be having his surgeries there.

 

Kellen was born at 9:25 am on Tuesday December 21st at CHOP’s Special Delivery Unit.  He cried right away and we were so relieved to hear that beautiful sound! Of course they took him right away to assess him but not before we got to see him for a few minutes on his way out.  He looked perfect! Aside from the heart defect, he was pretty healthy. 

 

He had his stage 1 operation with Dr. Gaynor on the 23rd.  He pulled through with no complications and we were once again relieved and couldn't wait to go see him.  His recovery went very well. He did develop a blood clot in his right atrium & also had a g-tube put in a few weeks after his surgery, due to feeding complications.  He was finally able to come home when he was 6 weeks old. That was just last week so we are still adjusting to our new routine. They expect his stage 2 operation to be when he is about 5 months old.  So until then, we just need to keep him healthy and hope for the best! Every day we have with him is a gift. The shock still hasn't worn off of what he has and will need to go through the rest of his life but we are just incredibly lucky to have him here with us. 

 

We will be forever grateful to CHOP and their phenomenal Cardiac Team.  I can never repay them for giving our son a chance at life but I will dedicate the rest of mine to raising awareness for children with CHD and help to improve the quality of life for these kids!  

Story by Kellen’s mom, Stacie - PENNSYLVANIA