INDEPENDENCE, Ky. — Nearly 40,000 infants in the United States are diagnosed with congenital heart defects, according to the CDC. Lyndsay Figgins McCullers never expected her son Corbin would be one of them.
"They told us that he had a major, major congenital heart defect that would require open heart surgery between three and six months old," she said.
The news came as a shock. McCullers had completed multiple Level 2 ultrasounds, where doctors told her Corbin’s heart looked good. But shortly after his birth, Corbin had trouble breathing.
"They whisked him back to the NICU probably within 10 minutes of his birth," she said.
First, doctors discovered he had Down syndrome, which is why they decided to do a heart test.
According to the CDC, congenital heart defects impact about 1% of births per year in the United States. However, about 50% of all babies born who have Down syndrome are also born with a congenital heart defect.
"I don't know that we know for sure (why it's more common in babies who have Down syndrome)," said Cincinnati Children's pediatric cardiologist Dr. Allison Divanovic. “We just know that in certain genetic conditions, there's a much higher incidence of congenital heart defects. It's not unique to Down syndrome.”
Divanovic said the diagnosis can impact the whole family.
"We have come a long way in terms of what we have to offer and to treat even the most complex congenital heart defects," she said. "So our expectation for most babies is that they're going to have a good outcome."
Doctors told McCullers that Corbin’s heart was working three times as hard as what’s typical so he could breathe and eat.
"The nurse practitioner hands us a bright yellow paper and it says 'congestive heart failure symptoms,'" McCullers said. "They were like, 'These are the things that you guys are going to be going through before surgery.' I remember looking at my husband and thinking, 'Oh my goodness. We're not equipped to handle this.'"
At about 3 months old, Corbin had his surgery at Cincinnati Children’s Hospital. Now, he’s 17 months old and McCullers said he’s hit milestones faster than anyone has anticipated.
"He likes to kind of defy the odds," she said. "He likes to do that ever since he was born."
Corbin’s parents want to make sure other families going through something similar know they’re not alone.
"What's helped us the most was getting connected with other parents going through the same thing," McCullers said. "Once you get through the other side, life awaits. You're going to be in the trenches, but I promise it gets better."
Her husband, Brett, said parents should not be afraid to ask questions and should always believe in their children.
"Just don't ever give up on anybody, just because they have a disability or something's medically wrong," Brett McCullers said.
Just a few weeks ago, Cincinnati Children’s opened a new center to support patients and families experiencing a congenital heart disease diagnosis. The hospital says it’s the first-of-its-kind in the country. You can learn more about the Heart and Mind Wellbeing Center here.
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