Today, in most cases it is possible to grow up well with a congenital heart defect. However, continued specialized care is crucial for health and quality of life into old age.

Everyone with a congenital heart defect (CHD) who will turn 18 can "move up" to an ACHD specialist, one of the approximately 350 pediatric cardiologists and cardiologists with additional qualifications for adults with congenital heart defects (ACHD) in German ACHD centers, ACHD specialist clinics and ACHD specialist practices. It is generally advisable to see a specialist regularly, even during the "transition phase" from the age of 15.

This even applies to patients with mild congenital heart defects, because with increasing age, life-threatening sequelae can develop. They are not always noticed or cause symptoms immediately. In addition, the risk of other cardiovascular diseases, and non-cardiac diseases increase with age. In the case of a congenital heart defect, these often have much more severe effects than in a "normally" healthy heart. Pregnancies are also different in the case of congenital heart defects.

Risky Exit

Despite that risk, many adolescents and young adults either don't see an ACHD specialist. The transition to adulthood, in particular, presents a hurdle. "Beginning of training, job or studies, change of residence, first partnership, lack of knowledge, inhibition to change to a specialist or to go to a doctor at all, that is roughly the sequence of reasons," Julia Remmele states.

The fact that a congenital heart defect is perceived as a burden and is preferred to be ignored is something the registered physiotherapist and scientist at the German Heart Center in Munich finds "understandable, but not advisable." Her current study at the Competence Network for Congenital Heart Defects shows how risky the frequent discontinuation of specialized treatment in young adulthood is.

Living Well into Old Age?

What can happen when you're young and have a well-corrected congenital heart defect? Quite a lot! Analysis of medical data from a total of 8,834 National Registry participants between the ages of 15 and 25 revealed that about a quarter (25.5 percent) of young female patients suffered from cardiac arrhythmias. In this age group, pulmonary hypertension was the second most common secondary condition with 4.5 percent, followed by arterial hypertension (3.6 percent).

"These are conditions with a high risk potential in patients with congenital heart disease and therefore cases for ACHD specialists. “The risk of life-threatening cardiac events from such complications increases if they are not detected early," warns Ulrike Bauer, executive director of the Competence Network for Congenital Heart Defects and the National Registry.

The experienced physician does not accept that a successfully corrected heart defect is as good as healthy heart after all. "A congenital heart defect remains. And only if I regularly see a specialist and take care of my heart health can I live well with it into old age."

Further Diagnoses

The researchers examined medical records of adolescents and young adults with various congenital heart defects of all three degrees of severity. 23.4 percent of them had a mild heart defect, 45.1 percent had a moderate heart defect, and 31.5 percent had a complex heart defect. The most common initial diagnosis was atrial septal defect (14.9 percent), followed by ventricular septal defect (12.8 percent), and tetralogy of Fallot (10.5 percent).

The secondary diseases of a congenital heart defect are joined by further diagnoses in the age group. According to the study, neurological disorders were present in 7.3 percent of 15- to 25-year-old patients, followed by musculoskeletal disorders at 6.9 percent, and mental disorders at 5.6 percent.

CHDs Belong in Trained Hands

"Overall, we have already identified up to four cardiac sequelae and seven non-cardiac conditions per patient in the phase between the ages of 15 and 25 years," summarizes study first author Julia Remmele. The researchers hope that patients and treating physicians will become more aware of the urgency of seamless specialized follow-up care. "Adults with congenital heart defects clearly belong in the trained hands of ACHD-certified specialists who have an overview of the wide range of possible complications in adulthood and know what needs to be done to avert dangerous health risks," says Ulrike Bauer.