What pregnant women should know about new diagnosis guidelines for congenital heart disease


(American Heart Association)

Congenital heart disease is the most common cause of death for newborn babies. And sadly, many parents only find out that their child could suffer life threatening and life-long health problems in the delivery room—or worse, when their child become sick days or week later at home—when it may be too late to prevent the most serious problems.

Today, however, the American Heart Association released new guidelines to help doctors to diagnose congenital heart disease earlier in the pregnancy, and treat infants more effectively.

“For most of us that take care of kids with congenital heart disease, the reason most people don’t know about it is because it's not on the outside, it's on the inside,” said Dr. Mary T. Donofrio, the lead researcher on the report and the director of the Fetal Heart Program and Critical Care Delivery Service at  Children’s National Medical Center.

“Fetal medicine becomes even more important. For these kids to stand a chance of surviving they have to be identified early, right at birth and get the care they need,” she added.

The good news is that for the first time, there are more adults with CHD than infants, meaning more babies with the defects are surviving into adulthood due to treatments and interventions that are available in utero or shortly after birth.

For pregnant women, it all starts with the ultrasound, which is the first line of defense in terms of detecting abnormalities in a fetus. 

But there are other women who are considered high risk for these defects, specifically those who:

-       have diabetes

-       are on anti-depressant medication or seizure medications

-       have a family history of congenital heart disease

-       became pregnant through in-vitro fertilization

These women should be screened using advanced technologies like fetal echocardiography, according to the report, which can provide better detail of the fetus at an earlier stage in the pregnancy.

The entire document is three years in the making, and the level of medical and research detail means that it is probably most suited for medical professionals.

But patients should be aware that it reflects progress in the field that could mean real life or death benefits to pregnant women and their babies.

How much might the recommendations cost you?

Well, at-risk women and those whose screenings actually detect potential problems with their babies' hearts may need to return to the doctor for more follow-up visits, which can come with out of pocket costs. And advanced testing can be expensive.

But the guidelines could give insurance companies the information they need to conclude that early, aggressive screenings could save lives and money in the long term.

“I think in the end, the long-term benefit is that we may save money in the long term,” Donofrio said. “One operation and they’re fine versus a kid that gets sick and needs long-term care.”

Abby Phillip is a general assignment national reporter for the Washington Post. She can be reached at abby.phillip@washpost.com. On Twitter: @abbydphillip
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