ORLANDO, Fla. – It would be devastating for any parent to hear their child has a severe heart defect, but it happens more often than you may think. They're called congenital heart defects, or CHDs. Most parents admit they've never heard of them, but pediatric cardiologists said they're as common as autism.
[WEB EXTRA: Adam's Story | Easton's Story | Children's Heart Foundation | American Heart Association | Hearts & Wines 2015 Event | Follow Adam's Journey]
Sarah McDade said everything with her now 9-month-old son, Adam, seemed normal until he was born.
"Adam is our third kid," McDade said. "We thought everything was going fine and going great, and then I remember hearing his dad say, 'Why is he purple?' and then, 'Why isn't he breathing?'"
That's when she said everything changed.
"Basically, he has half of a heart," said McDade. "I didn't know you could have half of a heart and live."
Fourteen weeks later, Adam had his first open-heart surgery. McDade got emotional when she described the day she handed him over to the doctors.
"The worst part was pre-surgery," said McDade. "When you're in that pre-surgery area and you're just with him and you're waiting for that team to come back so you can hand him over. I told them, 'Do your best work for him.'"
She said Adam's condition is one of the more rare CHDs, but in general, pediatric cardiologist Dr. William DeCampli said CHDs are not uncommon.
"Here at Arnold Palmer Medical Center, there's a child born with CHD about every other day," said DeCampli.
DeCampli said there are several different kinds of CHDs. Some may go away on their own, but others could require major surgery or cause death. Doctors aren't exactly sure how or why CHDs happen, but they aren't always detected during pregnancy.
That's why Lauren Hamilton said she didn't really know anything about them when her now 1-month-old son Easton was born.
"Obviously, people are born with heart defects, that happens," said Hamilton. "But I never would have thought it was a reality. It's something you hear on TV, it's not part of your normal vocabulary. You don't talk about it with your friends who are moms."
But she had to learn quickly when Easton came out blue.
Two of his major arteries were reversed, and without surgery, DeCampli said he wouldn't have survived.
"It was really scary," said Hamilton. "Absolutely terrifying, especially if you're not prepared for it. It's unreal, you know? You see a baby that looks totally healthy when he comes out other than his color. He doesn't look funny and then he has this really life-threatening defect. He's not going to live if he doesn't get this surgery on the inside, but he doesn't look like something should be wrong with him."
Easton was so fragile that his father, Brett Hamilton, couldn't even hold him until moments before he went into surgery.
"It'd hurt worse not to hold him for the rest of his life," said Brett Hamilton. "They have to tell you that, you know, part of the risk."
The Hamiltons said Easton was in good hands at Arnold Palmer Hospital for Children. DeCampli performed his surgery when Easton was just days old.
"He was born on a Thursday and he had his surgery on Monday," said Lauren Hamilton.
DeCampli said CHD survival rates are much higher than they used to be, but still not where doctors want them.
"We don't quite have it all figured out," said DeCampli. "The problem is, as good as we've gotten at treating some of the abnormalities, there are others that are still very challenging and many of those are not rare."
That's why McDade and Lauren Hamilton said they're trying to raise awareness to give more babies a fighting chance.
"I think a lot of times, when things go wrong with babies, it's scary to talk about," said Lauren Hamilton.
"We are very underfunded with the research," said McDade. "It's important because it's really what's going to keep Adam alive."
DeCampli said at this point, it's not just about survival.
"The next question becomes: How can we optimize their functional health status by giving them quality of life?" said DeCampli. "A lot of the hope for children born with abnormalities is that surgeons continue to gain experience, that we get insights into new treatments, and we're able to research them to try them out. Design them, work with both academic institutions and industry to come up with new instrumentation that can help us get a baby through critical periods of their heart disease."
Lauren Hamilton said as an educator, learning more about CHD is important to her.
"Before Easton went into surgery, there were several different studies that were being done that we had to decide whether or not we wanted to be a part of," she said. "Because my husband and I are both in education, it was important to us that that research continues. So being a part of those studies, not being afraid to talk about your issues, maybe will help get the word out about research and how important it is."
That's exactly why McDade said she's now putting a lot of her time into raising money for CHD research.
"I don't know what's going to come, but what I know is I want the research to be there," said McDade. "So doctors can say, 'Oh yes, we've seen this before,' and, 'Oh yes, we can do this for it.' I don't want to come to a place where the doctors tell me, 'There's nothing more we can do, we don't know why this is happening, and we've done everything we can.' I feel like if he can fight this battle that he has, I can surely go out and fight this battle for him."
McDade is now part of the Florida Chapter of the Children's Heart Foundation. She's co-chairing the Hearts & Wines 2015 event to benefit the Children's Heart Foundation and CHD research. It's taking place Friday, Nov. 13 from 5-8 p.m. at the John Rohan Regional Recreational Center in The Villages. For more information and to buy tickets, click here.
Both mothers said the most important thing is making sure their sons have the best and longest lives possible and to help make sure other babies won't have to suffer.
"I know Adam was put here for a reason, and because of him, the CHD world will never be the same," said McDade.
"What doesn't kill you makes you stronger," said Lauren Hamilton. "And your baby is way stronger than you ever thought they could possibly be."