Many adults who were born with congenital heart defects mistakenly believe that their childhood surgery cured their condition. Unfortunately, their doctors often think so, too. The reality is, congenital heart disease is a lifelong disease.
More than half of congenital heart disease patients have moderate or complex disease that can be treated, though they often have lingering complications that can affect their health throughout their lives.
Some patients with simple heart defects may be cured by surgery or a device, but the only way to know for sure is to be examined by a pediatric cardiologist or an adult congenital heart specialist.
These unknowns make it important for patients born with congenital heart conditions to transition to an adult congenital heart specialist as they come of age. If the transition does not occur, it can lead to stress on the heart and delayed or inappropriate care.
Take the right steps
Transitioning from pediatric care to adult care can be seamless if you follow the right steps. If you are a parent whose son or daughter has a congenital heart disease, or a patient yourself, here are five steps to help make the transition:
- Get educated: Not all congenital heart defects are the same – there are more than 40 known types. Children often know little about their disease, and as these kids reach their upper teens, it is important for them to understand how their heart is built and how it functions.
- Make introductions: It’s important for the patient to know his or her adult congenital heart disease team. This will be an important relationship, and it should be treated as such. It’s equally important for the doctors to know the patient and his or her unique situation.
- Develop trust: The patient and the patient’s family, pediatric cardiologists, and adult cardiologists should all feel comfortable working together as a team.
- Make the move: To foster confidence in the transition, the pediatric congenital heart disease team could attend the initial visits at the adult facility.
- Take control of your health: Often we see parents helping their children transition to an adult cardiologist when the children are in their late teens or early twenties. Eventually these young adults start to come into the clinic on their own. It’s rewarding to see them take full responsibility for their health, and it’s empowering for them to understand their conditions and learn how to safeguard their health.
Transition on your own terms
It’s best to transition over a period of time rather than during an emergency. If the patient needs to be hospitalized suddenly but is now 18 or older, the patient may not be able to see the pediatric heart specialist who cared for him or her as a child.
Several physicians at UT Southwestern Medical Center and Children’s Health in Dallas have years of experience helping patients transition to adult congenital heart specialists. In August 2015, we launched a formal Transition Clinic dedicated exclusively to this process under the leadership of Dr. Tom Zellers. Pediatric congenital heart specialists serve children and their families at Children’s Health, and adult congenital heart specialists serve patients at UT Southwestern on the first Thursday of every month.
To learn more about transitioning to an adult congenital heart specialist, request an appointment at the Transition Clinic online or call 214-645-8000. If your child or young adult needs to reestablish congenital heart care and you are interested in connecting with Children’s Health, call 214-456-2333.
