Congenital heart disease is the most common cause of death among newborns. And, sadly, many parents find out in the delivery room that a child could suffer life-threatening and lifelong health issues, or days or weeks later at home when it may be too late to prevent the most serious problems.
To help doctors diagnose congenital heart disease earlier in the pregnancy and treat infants more effectively, the American Heart Association recently released guidelines that call for some women to be screened using advanced technologies such as fetal echocardiography.
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"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 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 said in an interview.
For the first time, there are more adults with congenital heart disease than infants, which means that more babies with the problem are surviving into adulthood because of treatments and interventions that are available in utero or shortly after birth, Donofrio said.
For pregnant women, it starts with the ultrasound, which can detect fetal abnormalities.
But there are other women who are considered high risk, specifically those who have diabetes; take antidepressants or seizure medications; have a family history of congenital heart disease; or became pregnant using in vitro fertilization.
These women should get an advanced screening that can provide better detail of the fetus at an earlier stage in the pregnancy, the report said.