What parents need to know about congenital heart disease

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BIRMINGHAM, Ala. – During pregnancy, there are a lot of things expectant moms can do to prevent birth defects. Sometimes, though, even if a woman takes precautions, a birth defect occurs for no known reason. This can be the case with congenital heart disease. 
 
Details about congenital heart disease 

Congenital heart disease is the most common birth defect, affecting approximately 1% of the human population. About 25% of these cases are considered critical, meaning the patient may need surgery within their first year of life. 
 
With critical forms of congenital heart disease, babies may experience heart failure symptoms such as breathing too hard and fast or having difficulty with feeding. They also might have low oxygen levels, which is called cyanotic congenital heart disease.  
 
“Instead of having normal oxygen saturations in the high 90s, it might be down in the 80s or 70s because of how the blood flow to the heart is going before a series of surgeries or palliations or fixes are done,” said Camden Hebson, M.D., a pediatric cardiologist at Children’s of Alabama. 
 
Diagnosing congenital heart disease 
 
Hebson provides parents some peace of mind in knowing that diagnostic advancements for congenital heart disease are improving survival rates. One of the most common ways to detect congenital heart disease is with pulse oximetry screening. He urges parents to make sure the hospital where they’re delivering performs congenital heart screenings. 
 
“We’ve got an algorithm by which the nurseries operate to say that these oxygen saturations are too low, it could be too low in the hands or too low down in the feet,” he said. “That then alerts the nursery to say this could be because of a congenital heart defect, and therefore we need to have a cardiology consult, an echocardiogram, to see if this is a real congenital heart defect that’s causing this or not.” 
More reassurance comes in the fact that after a diagnosis is made, there are multiple experts to help, including a cardiologist and heart surgeon.  
 
“They’re going to walk you through all the way on how this is going to be addressed. With most congenital heart disease now, patients do really well long term. For example, there are more adults who have congenital heart disease now than kids, because kids live through their pediatric years and become adults and still have that same congenital heart disease. The expectation is these kids are going to do well over time,” Hebson said.  
 
Treatment options 
 
Procedures to address congenital heart disease are becoming increasingly less invasive. Many conditions, Hebson says, can be addressed in cardiac catheterization labs. 

 
“You can put in new valves that 20 years ago you could never do. You can put that new valve in with a heart catheterization. It doesn’t require any type of open heart surgery to do that. If you have a hole in your heart, you can plug that hole with a device to prevent the blood flow from abnormally going through it anymore, and you can do that in the cardiac catheterization lab. Many things can be addressed without open heart surgery now, and that’s a really good thing.” 
 
At Children’s of Alabama, excellent leadership and teamwork also are key. Leaders ensure the hospital has the latest technological advancements in place, and they’re proud of the hospital’s many success stories surrounding congenital heart disease. 
 
“I’ve been here for five years, and it’s a really great place,” Hebson said. “The surgeons, the ICU doctors, we all work together really well, and it’s collaborative, and it is sort of making sure that everybody is held accountable to doing things the right way, too.” 
 
That’s especially important in tough cases.   
 
“I’ve been so impressed by the people who are here and the leadership making sure this happens the right way,” Hebson said. “And when that happens, even in the really hard cases, things work out the best they can, and you feel really good about that.”