Congenital heart defects (CHDs) are a common problem among newborns, present in about 1% of births or 40,000 infants every year. This may seem surprising – are there really that many children walking around with heart problems? – but in reality, most CHDs are mild. Only about 25% of these children have a critical CHD, defined as one that needs surgery or another procedure within the first year of life, and some may never need a major medical intervention at all.
So if most CHDs are minor, how worried should potential parents be? The answer depends on issues like race and class as much as that of diagnosis. Quality of life among Latin American and Black families whose children have CHDs, as well as among low-income families, are worse than that of white, wealthy families, and typically receive poorer quality medical care. As doctors, then, if we are to hew to our responsibility to do no harm and treat all patients equally, we need to reassess how we handle the long-term issues that can come with CHDs.
Identifying At-Risk Patients
The first step in addressing health disparities among CHD patients is identifying those who are at the highest risk of complications, and that starts before birth. Obstetricians, as well as maternal-fetal medicine specialists, can diagnose serious CHDs before birth so that the delivery team is prepared for any potential complications. In some cases, fetal surgeons can even make key interventions before birth using specialized techniques.
The most at-risk patients, though, aren’t just those with the most serious defects, but those who have limited access to healthcare. In a study of one-year outcomes among infants with hypoplastic left heart syndrome (HLHS), in which the left side of the heart doesn’t develop properly, and transposition of the great arteries, Hispanic patients had worse outcomes on mortality and hospital readmission. Maternal education can offer some protection, as can insurance, but these infants still fare worse than non-Hispanic infants with the same conditions, even when studies control for severity.
Finding The Gap
There are several points at which we, as care providers, can intervene in the lives of CHD patients, the first of which is before birth. As noted above, it’s important to identify CHDs before birth so that the medical team is properly equipped to respond. However, if obstetricians don’t have the necessary equipment or expertise to accurately diagnose a given CHD, prenatal care fails to provide necessary support. All patients should have access to care providers who can offer fetal echocardiography and hi-def sonography; these services can’t be restricted to wealthy patients.
The delivery room is another key area of concern for CHD patients and their families. Black mothers are already three times more likely to die during childbirth or shortly thereafter than their white counterparts, and this is in otherwise normal pregnancies. When the infant also has a pre-existing health complication, the delivery room can be a dangerous place. Without proper diagnosis, delivery teams don’t know there should be a pediatric cardiologist or cardiac surgeon present at the birth – or even in the hospital.
If an infant with a critical CHD needs to be transported to a different facility, this can also delay necessary care and leave infants and their mothers separated during a time typically spent bonding. Ideally, doctors should arrange for mothers to deliver at an appropriate facility, rather than arranging for transport after birth. Such facilities are better equipped for such a birth and more likely to provide high-quality care. When patients are given equal access to care providers during delivery and for early interventions, they’re more likely to attain equitable health outcomes.
Looking To The Future
Though many CHD patients never need serious interventions, for those with critical health issues, life can be challenging and families need long-term supports. An Australian study of critical CHD patients found below average emotional health in children as young as 1-2 years old who had at least one CHD-related surgery in their first year of life. Older children, between ages 2 and 5, fare even worse, rating on average 10 points below their peers on emotional functioning. Mothers also rank lower on quality of life.
Social workers or other mental health care providers should follow even those children with a stable CHD, and families need access to ongoing support throughout childhood and adolescence. Though mental well-being and physical health are not perfectly equivalent metrics, the impact of CHD diagnosis and intervention can last for years, and recovery doesn’t stop with surgery or a scar. Among the most vulnerable patients, racial minorities and those of lower economic status, such provisions are especially important as stigma and financial barriers can prevent these group from accessing mental health and developmental services.
Racial and economic disparities impact many aspects of our health system, but fetal and infant heart health presents an especially dire situation. Without proper support, children with CHDs can suffer years of compromised health or even die.
The healthcare system owes patients the chance at an equal start in life. Providing standardized support for CHD patients is a good place to start.