In the 1940s, only 20 percent of the babies born with congenital heart disorders were likely to live to celebrate their 18th birthday. Advances in treatment have dramatically improved those odds to the point that now more than 90 percent of newborns with congenital heart defects can expect to live into adulthood.
That’s the good news. The downside, however, is that for many patients going out to pursue their adult lives, follow-up care for their heart condition gets dropped somewhere along the way.
Although both the American Heart Association and the American Academy of Cardiology recommend regular follow-up by a specialist in adult congenital heart disease, making that care available has been a challenge. In the past, part of the problem was obtaining health insurance coverage for a pre-existing condition as patients became financially responsible for their own medical care. Even when insurance is available, there remains the difficulty of finding a cardiologist who specializes in caring for adults with congenital heart disease.
“Beyond the time preparing to become a physician and a cardiologist, additional years of training are required, so cardiologists specializing in congenital heart disease in adults are relatively rare and usually found only in major metropolitan areas. The Alabama Adult Congenital Heart Disease Program is the only one of its kind in the state. There is nothing like it in Mississippi or the panhandle of Florida, and there are only a few in other parts of the country,” Cribbs said.
An assistant professor of medicine at UAB, Cribbs is director of the program. In addition to seeing patients at the Kirkland Clinic, he, a cardiac nurse and an echo technician have recently begun outreach clinics with monthly trips to Huntsville, Montgomery and Mobile.
“We want to make follow-up care more accessible in these cities and to people in poor rural areas nearby who might find buying gas and driving to Birmingham difficult. From Mobile, we should also be able to offer care to patients who live along the Mississippi coast and in northwest Florida,” Cribbs said.
“Most cases can be treated with surgery and medications,” Cribbs said. “We owe a great debt to the work of neonatal intensive care units and pediatric cardiologists and surgeons. Their success has paved the way for us, and their work is why so many patients are surviving into adulthood today.
“With continuing advances in surgical and nonsurgical procedures, there are many new possibilities we can offer adult patients. Valves can be replaced and some rhythm disorders can be treated using a catheter without the need for surgery.”
As patients born with congenital heart defects tend to be at higher risk for developing additional heart disorders later in life, the adult congenital heart disease program also works closely with specialties that deal with disorders related to aging and lifestyle. Patients are monitored for early signs of diabetes, hypertension, and high blood lipids as well as heart failure, endocarditis and arrhythmias.
Cribbs teams with physicians in all specialties to coordinate care. One area where that coordination is particularly visible and growing is in managing high risk pregnancies.
“Patients who have grown to be young women have the same dreams as other adults—career, perhaps marriage and family. Depending on the condition and treatment to manage it, there can still be greater risks from the extra burden pregnancy places on the heart. We work closely with maternal/fetal medicine to monitor and protect the health of both the mother and the child through pregnancy and delivery,” Cribbs said.
The questions “why do congenital heart disorders happen?” and “will I pass this problem on to my baby?” are concerns shared by many maternity patients who were born with their own congenital heart disorder.
“We’re seeing fewer of some of the defects we saw in the past now that we have identified medications associated with problems if taken during pregnancy. Some causes are still unknown, and others seem to have a hereditary link,” Cribbs said.
In disorders with a higher risk of passing a congenital heart disorder on to the fetus, advanced imaging and ultrasound devices can screen for anomalies early in pregnancy. If problems are detected, in some cases treatment can begin even before delivery.
As advances in treating congenital heart disorders in both children and adults continue to progress, today’s babies born with heart defects should be even more likely to live to see eighteen candles on their birthday cakes and grow to live longer, healthier, more productive lives.
