Heart defect diagnosis often comes too late—or not at all—for Latino infants, study finds

Infants born to Latino, low-income or limited-English-speaking parents are more likely to be diagnosed later with congenital heart disease than white infants—or lack a prenatal diagnosis at all, a new study found.

Congenital heart disease, which consists of structural heart abnormalities, is the most common type of birth defect. The findings were published in the Journal of Pediatric Cardiology.

Experts say the findings cast more urgency on caring for babies born to parents whose preferred language is not English and Latino and low-income families amid America's fight against structural racism within health care.

Though fetal interventions are limited, early prenatal diagnosis helps parents plan and make decisions around pregnancy, said co-author Dr. Alicia Chaves, a pediatric cardiologist at the University of Maryland Medical System. It also allows clinicians to plan ahead for treatments soon after birth.

Babies who don't have a prenatal diagnosis are at higher risk for adverse events after birth, while having a prenatal diagnosis is associated with better outcomes, she said.

What is a congenital heart defect and how is it detected?

Congenital heart defects affect the structure of a baby's heart. There are many types, and most are mild—such as a small hole in the heart that heals—to types that severely hinder heart function, according to the Centers for Disease Control and Prevention.

About 1 in 4 babies are born with a critical congenital heart defect, which means they may need surgery or other procedures throughout early life.

Typically, fetal echocardiography, an ultrasound of the baby's heart, is limited to high-risk cases such as pregnant mothers with a family history or concerns detected in routine ultrasounds.

"Thus, if routine obstetric screening ultrasound does not detect CHD, it can result in a lack of referral or late referral" for a fetal echocardiograph, delaying detection of congenital heart disease, Chaves and her colleagues wrote.

What did the study find?

Researchers analyzed records of 163 babies who had surgical intervention within a month of birth at the University of Maryland Children's Hospital from 2011 to 2020.

They found:

• Babies born to Latina mothers were 3.2 times less likely to be diagnosed before birth compared with their white counterparts.
• Babies born to mothers with a preferred language other than English were five times more likely to lack a prenatal diagnosis than those born to English speakers.
• Non-English-speaking mothers who did receive a prenatal diagnosis were diagnosed, on average, five weeks later than English-speaking patients.
• Those from neighborhoods with lower socioeconomic status were diagnosed up to 3.4 weeks later.

The findings add to growing evidence of disparities in fetal heart defect diagnosis. Earlier studies have showed that lower-income, Hispanic and rural patients or those with public insurance were less likely to receive prenatal diagnoses for certain types of congenital heart defects.

"Knowing in advance that they have a significant congenital heart disease is extremely important because some of those malformations will require immediate attention in the first minute after birth," said Duke University Health pediatric heart surgeon Dr. Ziv Beckerman.

What could be causing the disparity?

Dr. Keila Natilde Lopez, a pediatric cardiologist and associate professor at Baylor College of Medicine in Houston, said the findings shed light on creating more accessible resources for families.

"Our health care system is very challenging to navigate. It's even more challenging to navigate when English is not your primary language, or when you have a lower health literacy, or come from a lower socioeconomic status," she said. "Many websites of these various institutions that take care of children with complex needs are not written at an appropriate health literacy level, or in the appropriate language."

Creating a pipeline of Latino, Hispanic and Spanish-speaking physicians is also important to diversify medicine to better serve communities, Lopez said. Of all active physicians in the U.S., only about 6% are Hispanic, despite Hispanic and Latino people making up almost 19% of the nation's population.

What can be done?

Along with language barriers, access to prenatal care could also be a factor fueling these disparities. Disadvantaged mothers may be less likely to be insured, which can delay their access to prenatal care and in turn delay or cause a missed diagnosis, Chaves said.

Women with prenatal care should have an anatomy scan at 18 to 20 weeks' gestation, she said.

"Ideally, even if the heart defect hasn't been noted prior to that, it would be noted by then," she said. "Typically following that, then they're referred to see specialists like our fetal heart team."

Many neighborhoods in the U.S. do not have tertiary care centers, or hospitals that provide specialized care. Better protocols for detection and translation services to parents in these areas is essential so they can be diagnosed and referred, Beckerman said.

"If you have a baby that is planned to be delivered in an area with no supportive cardiac care, then they will do poorly, and may even not make it to receive proper care."