“Skylar was born February 5th, 2019 at 12:48 PM. She was a whopping 6 lbs 1 oz and what seemed to us as healthy. About 6 hours after she was born, they noticed she had a heart murmur which is usually common in babies, but they just wanted to make sure that’s what it was so they did an ultrasound of her heart. After a 2 hour echo, they came and told us our daughter had a tumor right in the center of her heart. We spent a few days in the NICU and everything checked out good so we went home. About a week later, Skylar was having a hard time breathing and I had to call 911. They took us to Motts which is where we found out that the tumor was growing fast. At one month old, Skylar had her first open heart surgery to remove part of the tumor. Everything seemed to be okay after that and the echos showed that her blood flow was clear and her heart was working good. A month after surgery we came in for an echo and a follow up, only to find out the tumor grew back. She was losing weight, she was having a hard time eating, it was just all going down hill. We put her on the transplant list, we thought about surgery again, we tried to think of anything and everything to save our baby girl, but the doctors were giving up. They told us that she won’t make it past her first birthday. As a mother, I couldn’t accept that answer. I spent countless nights researching everything I could about Skylars diagnosis and any other hospitals in the world that have encountered this. We finally got to go home after 5 months in the hospital so Skylar would be comfortable and she started gaining all her weight back, she was eating regular formula, everything started to look up. I was on google researching about her tumor, and this article came up about a 10 month old boy who had a tumor 10 times the size of Skylars and he had surgery at Boston Children’s Hospital where they successfully removed the whole thing and he was able to live past his first birthday. After reading all about it, i contacted Boston myself and we are now in the books for Skylar to have a cardiac cath and surgery to remove the entire tumor.” – written by her mother, Alyson. November 2019