Daniel’s fight against his congenital heart defect

This is a photo of Daniel after his first heart surgery.

GRAVES COUNTY, KY — Mothers-to-be often say they just want their child to be healthy, but there is always that chance that they won’t be.

The Centers for Disease Control say one out of every one hundred babies born will be born with a congenital heart defect or CHD.

That means there will be a problem with the structure of their heart.

Daniel has a feeding tube at 10 months old.

At 10 months old, Daniel can make funny sounds, army crawl, and has probably been through more than most adults.

“He’s a lot more happier than other babies,” his mom Blaine Phillips never knew about congenital heart defects until Daniel was born.

“When did you find out that there was anything wrong?” I asked. “We found out when he was about 5 and a half hours old,” Phillips said.

Daniel was flown to norton’s children hospital in louisville.

Three days later, he had open heart surgery. Phillips found out her baby has hypoplastic left heart syndrome or HLHS.

“Basically means the left side of his heart – the left two chambers of his heart – did not grow nor do they function,” Phillips said. “I was heartbroken. I was expecting to have a normal baby and you don’t get to bring that baby home.”

Daniel had another open heart surgery at five months old.

Daniel and I have something in common. We are both 1 in 100 babies that are born with congenital heart defects.

Daniel and I have different types of CHD, but we are a part of the 1% of babies born in the United States who will have a heart like ours.

“He’s doing good. If we could get him to gain some weight he would do a lot better,” said Phillips.

His “nana” Janet Gore says Daniel’s fight has made Phillips stronger. “At first, she would just freak out over every little thing. Now she’s getting more where she doesn’t,” Gore said. “I think with him getting older and getting stronger has really helped.”

Blaine Phillips and her son Daniel.

Daniel has a feeding tube for now. He’ll have to have another surgery in a few years and he’ll need care for life.

But from my own experience, he and his scars will fit right in.

You can follow Daniel’s journey on Facebook through a group called Daniel’s Progress. You can check out that group here.

For more on this story and others, like Leah Shields on Facebook.