Decades of advances in pediatric cardiology has allowed for children with congenital heart conditions to thrive, growing into adolescents and then adults capable of starting families of their own. However, this does not mean that these adult congenital heart patients should stop seeing their physician.
In this Q&A, Ali N. Zaidi, MD, Director for Adult Congenital Heart Disease at Mount Sinai Heart and Associate Professor of Medicine (Cardiology) and Pediatrics at the Icahn School of Medicine at Mount Sinai, discusses the importance of transitioning to an adult cardiologist and continuing care to ensure that patients can lead long, healthy lives.
What are the different types of congenital heart disease?
Congenital heart disease is a condition that children are born with and can range from the very simple to the very complex. Sometimes children need immediate interventions or operations, and for others, we may simply monitor their condition.
On the simple side, there is an atrial/ventricular septal defect, often called “a hole in the heart,” which is a defect in the wall between the right and left chambers of the heart. These are very common defects and may or may not warrant treatment. More complex congenital heart conditions include a condition called Tetralogy of Fallot, which is four different heart defects, and often does require that the infant or child undergo surgery. Other more complex conditions include transposition of the great arteries, a condition in which the large blood vessels of a child’s heart may need to be rerouted.
What treatments are available?
Sometimes infants or children born with congenital heart disease need an intervention that’s minimally invasive. An example would be a catheterization in which a tube is guided into the heart through the blood vessels for diagnosis or treatment. If there is a major problem, a child may need an open-heart procedure.
Depending on what the congenital heart defect is, these children will need to receive long term evaluation and treatment. This may continue as the child grows, throughout their teenage years, and into adulthood. Almost 90 to 95 percent of children who are born with congenital heart disease survive into adulthood. It’s very important to understand that the treatments we now have are tremendously successful—and these children can grow up and lead typical adult lives. It is now estimated that there are more adults with congenital heart disease than children living with the condition in the United States.
When should an adolescent with a congenital heart condition transition from their pediatric cardiologist to an adult congenital cardiologist?
It’s very important that children and adolescents who are born with congenital heart disease continue to seek appropriate care. Transition of care is a process which often should begin in the teenage years. Sometimes, it takes multiple visits to have an adolescent patient appropriately transitioned to adult-based health care. Transfer of care, however, is a different process in which a patient’s care is “transferred” to an adult congenital heart specialist; this should happen when they are older. There is no hard and fast rule, but by the time a patient is 21 years old, they should be receiving care from an adult congenital cardiologist.
What kind of care should an adult congenital heart patient expect?
Often, patients go for many years without the need for any intervention. But adult congenital heart care often does require interdisciplinary care. There may be kidney, liver, or lung issues that come up as a result of the patient’s underlying condition or as they get older, patients tend to acquire adult-based health conditions like hypertension, diabetes, or coronary artery disease. It is also possible that there may never be a problem, but it is best to follow patients with congenital heart disease on a regular basis.
We also have to think about the social fabric of their lives. Patients grow up and get jobs. They often move to another city or country, they get married, and want to have kids of their own. In doing so, they may pass the condition down to their own children. Young women with congenital heart disease may need to consult with a maternal fetal medicine specialist since some of these patients are considered higher-risk pregnancies. At the Mount Sinai Adult Congenital Heart Disease Center, we bring in this multi-faceted, multi-disciplinary approach to meet the ongoing needs of patients as their lives change, including young women with the condition who are pregnant or are considering pregnancy.
Are there lifestyle considerations that these patients should be aware of?
We always encourage our patients with congenital heart disease to try to have as normal a life as they can. When I see patients who are in their 20s and 30s, and they are doing well, I encourage them to enjoy life and have fun—within measure and with regular follow-ups.. Life should be no different than what it is for somebody without congenital heart disease. We want these young patients to go out there and live full lives, have careers and when able, their own families. We will be there, if and when they need us.
What services does Mount Sinai provide for adult congenital heart patients?
Our adult congenital heart disease program at Mount Sinai is one of the few programs in New York that has been accredited through the Adult Congenital Heart Association. This accreditation confirms that we are providing comprehensive, multidisciplinary care to adolescent and adult patients with all forms of the condition.
What does accreditation mean?
It means that we offer all facets of care when it comes to adult congenital heart disease. At Mount Sinai Heart, we provide state-of-the-art care for all forms of congenial heart disease from adolescents to older adults. We can enlist the Mount Sinai Health System’s world-class physicians to provide multi-disciplinary care be it for pregnant women with the condition, evaluations for transplantation, or cardiac interventions either in the catheterization lab or surgical room. We also provide pulmonary hypertension evaluation and treatment, which is an important part of adult congenital heart disease care. We have a specialized cardiac imaging team here at Mount Sinai exclusively for congenital heart disease providing exceptional multi-modality imaging for our patients. We provide 360-degree care—complete and comprehensive with excellent outcomes.
Is there anything else that patients should know?
I urge adult congenital heart patients to find the right provider and stay in care—that is very important. I see many patients in their 20s and 30s and often they feel fine. At that stage, it is easy to fall out of care and not seek appropriate long term care with an adult congenital heart disease cardiologist. But congenital heart disease is a condition that needs to be followed throughout your life. Find the right adult congenital heart disease program and make sure to follow your physician’s instructions. You’ve got a full life ahead of you and our job is to take you all the way.