While recent medical and surgical advances have improved the lives of children who are born with heart defects, recent studies have shown that there are still significant racial and ethnic differences in care that can be felt throughout a person’s life.
“Congenital heart disease has an equal burden across races, but poor outcomes have demonstrated a higher prevalence within the African American community,” said Deidra Ansah, MD, pediatric cardiologist at Texas Children’s Hospital.
What is congenital heart disease?
Congenital heart disease (CHD) is a broad term that refers to changes in the heart’s structure or function that are present at birth. Variations in the location of a heart valve, the number of heart chambers or the way the heart pumps are some examples of CHD. According to Dr. Ansah, about 40,000 babies are born every year in the United States with this condition.
Significant heart conditions like CHD can often be seen in a routine pregnancy ultrasound. Fetal cardiologists who specialize in addressing CHD in an unborn baby will then become involved. CHD can also be discovered in older children when a doctor notices abnormality in the sound of the heart, or a parent reports that a child can’t keep up with his or her peers physically. In these cases, the heart problem may be subtle, but can still lead to significant injury if left untreated.
How is CHD treated?
Regardless of when the heart condition is diagnosed, a pediatric cardiologist should be involved to perform further imaging such as advanced prenatal ultrasound or cardiac magnetic resonance imaging (MRI) that will guide treatment. Sometimes no treatment is needed right away and a pediatric cardiologist will keep a close watch over the baby’s development. Other times, however, surgery is required to help the heart do its job. Rarely, when the CHD is severe, procedures can be done while the baby is still in the mother’s womb to help him or her progress to a full or near term delivery. Even when a structural problem in the heart can be repaired with surgery, the person with CHD will still need long term cardiology care.
“CHD is lifelong heart disease and that’s something that is very important for the general population to know because these are conditions that need to be followed for the entirety of an individual’s life,” said Dr. Ansah. Texas Children’s has one of the top Adult Congenital Heart Disease Programs in the nation and is accredited by the Adult Congenital Heart Association (ACHA).
How are the outcomes different for African Americans?
Studies published in medical journals such as Circulation and Journal of Pediatrics have confirmed that across the nation, babies born to African American mothers are more likely to die from complications of their CHD than white or Hispanic babies with similar conditions.
“There’s still a lack of knowledge about the fact that there are different disease burdens across different ethnic populations – not just because of genetic predisposition but because of some of the social and institutional systems that have disproportionately affected African Americans,” said Dr. Ansah.
African American communities have suffered from generations of societal forces that have made some of the building blocks of good health, such as insurance coverage and healthy food, more difficult to access. When these forces contribute to a woman’s poor health, her baby can also be at risk.
Inequities in the healthcare system have also been a factor in poor outcomes.
“There’s data that shows improved outcomes for African Americans who have a physician who is also African American. That representation in itself is something that has been lacking,” said Dr. Ansah.
Steps towards more equitable outcomes for children and adults with CHD
Health care providers and patients can work together to improve the lives of African American children with CHD. While there isn’t a solution specific to pediatric heart disease, looking at weaknesses in the provider-patient relationship can be helpful for many medical conditions.
“At Texas Children’s, I think there’s an increased desire for awareness,” said Dr. Ansah. “That’s something that can be done across institutions – making sure we’re creating a community of openness so that real conversations can be had to move the needle forward in terms of bringing awareness to our blindspots and improving those blind spots.”
This type of work fosters a medical community that encourages patients to know all they can about their own health. Patients in turn benefit from learning about any medical conditions that may affect them or their family.
“As much as the medical community is working towards addressing things such as implicit bias and inherent disparities that exist in healthcare, we have a long way to go. Until we get to that point, the best advocate for your health care is always going to be you. Empower yourself to ask the questions that you may or may not feel comfortable asking and to get the data that you feel that you need,” said Dr. Ansah.
To schedule an appointment with a cardiologist at Texas Children’s Heart Center, call 832-824-3278.
