Due to significant advances in the diagnosis and treatment of congenital heart disease (CHD), many patients are surviving longer into adulthood. In fact, the number of adults with CHD — nearly 50 million, according to research — is now larger than the number of children diagnosed with CHD and it’s only expected to rise.
The pathway from CHD to ACHD
Congenital heart defects develop in babies before they are born and impacts the structure of the heart — namely, the way blood flows. Babies with CHD typically need to undergo surgery shortly after birth to help their hearts work as it should. But, in some cases, the surgical interventions are not curative and are not designed to last forever.
“Although there are many treatments available to young CHD patients, some do not realize they require care beyond their childhood years, and into adulthood. , says Anjlee Patel, MD, a pediatric and adult congenital cardiologist at AdventHealth Tampa.
“Many of the teenagers transitioning into young adulthood feel great because they’ve had a pediatric cardiologist keeping tabs on them and parents who’ve made sure they went to appointments and followed up with care,” she says. “Once they grow up, though, and go to college or move out and move on with their lives, the follow up that they regularly had no longer occurs due to life changes, jobs, or how great they feel.”
“That’s when problems can arise”, Dr. Patel says.
Sometimes, young people with adult congenital heart disease (ACHD) develop complications that go unnoticed because their condition isn’t being routinely evaluated and managed. Symptoms can also come on suddenly due to long term complications from their heart disease or previous surgeries.
“Someone may be fine one minute then rushed to the emergency department the next depending on the complications,” Dr. Patel says. “These patients have most likely fallen through the cracks with their care. We then pick them up at a point when they’re the sickest of the sick, and it can be hard to get them back to their baseline.”
This care gap is why it is so crucial to help patients understand the complexities of their diagnosis and the importance of their medications and care from a very young age so that they continue to care for themselves as they get older. This is where adult congenital cardiologists can help.
An emerging specialty for a complex condition
As a pediatric and adult congenital cardiologist, Dr. Patel helps bridge the gap for people living with CHD — caring for them from childhood to older adulthood without having to transition to another cardiologist.
“The area of adult congenital cardiology is new, and it’s emerging,” she says. “Because the patient population of adults with CHD has grown so much in recent years, we don’t have many providers yet who have the expertise and experience necessary to take care of these adults.”
Still, the need for specialists in adult congenital heart disease is significant, Dr. Patel says, pointing to the increasingly complex health concerns people typically face as they age, such as diabetes and HTN along with the complexities of their underlying heart condition.
“Adult congenital heart disease specialists help coordinate whole-person care for patients,” Dr. Patel says, adding that her role for patients with CHD is similar to that of a primary care provider. “We’re these patients’ medical home base for a lot of their medical needs. We can also help coordinate routine care for them such as Ob/GYN care as well as other health maintenance issues.”
Because many patients with CHD also have genetic syndromes and special needs, families may need additional social support, such as a family member or friend taking the patients to appointments and ensuring they’re taking their medications on time and as directed.
“My job is to help connect these patients with everything they need,” Dr. Patel says. “And that includes social resources.”
Find convenient ACHD care
You can find heart care for your whole person through our pediatric cardiology department. To make an appointment or learn more about our services and expertise in adult congenital heart disease, call Call813-756-1740. You can also visit adventhealthforchildren.com/tampaclinic.
Anjlee Patel, MD Board certified in pediatrics and internal medicine, and sub-board certified in pediatric cardiology and adult congenital heart disease, Dr. Patel specializes in the diagnosis and treatment of congenital heart disease in adults and children.
