Congenital heart defects are the most common congenital malformation in Germany. Nevertheless, many critical cases are not detected before birth. On the Day of the Child with Heart Disease on May 5, pediatric cardiologists and the Action Alliance for Congenital Heart Defects (ABAHF) are calling for uniform standards for better prenatal heart screening in prenatal care.

About one percent of all newborns – around 8,700 children per year – are born with a heart defect. A quarter of them need treatment immediately after birth. However, the detection rate of critical heart defects in Germany is only 32 to 38 percent. In countries such as France, on the other hand, up to 87 percent of cases are detected prenatally.

The professional societies cite inadequate screening methods in basic diagnostics, a lack of mandatory extended examinations of the outflow tracts and large vessels, and heterogeneous examination quality as the main causes. In addition, a specialized fetal heart examination is often only carried out if there are already abnormal findings. The training and technical equipment are not uniformly secured, and there is no mandatory quality control.

The pediatric cardiologists demand that any suspicion of a congenital heart defect must be regularly accompanied by a pediatric cardiological clarification as part of prenatal care. Only specialized pediatric cardiologists can reliably assess the variety and complexity of the malformations, assess the further development of the heart defect and recommend optimal birth planning.

Early diagnosis enables targeted birth preparation, the initiation of life-saving measures immediately after birth and a significantly better prognosis for the affected children. The experts are therefore calling for uniform, expanded screening standards nationwide, better quality assurance and appropriate remuneration for complex fetal cardiac diagnostics.

The Action Alliance for Congenital Heart Defects and the German Society for Pediatric Cardiology and Congenital Heart Defects (DGPK) see an urgent need for action on the part of health policymakers.

Information service on the topic

Podcast with Prof. Dr. Ulrike Herberg: Heart defects detected before birth: What now?
https://herzstiftung.de/podcast-herzfehler-schwangerschaft

The Heart Foundation’s clinic and doctor finder “Dein Herzlotse” helps those affected with their online search under https://herzstiftung.de/dein-herzlotse

The HerzKind Association offers referral to contact parents or contact groups throughout Germany and sends experience reports on individual heart defects from the HerzBlick magazine on request. Contact by phone 0531 220 660 or by e-mail info@herzkind.de.

Advice on social law issues is available from the counselling centre of HerzKind e.V. and the Children’s Heart Foundation on Tel. 0531 220 6612 or ahf-beratung@herzkind.de, as well as from the BVHK on https://bvhk.de/angebote-hilfe/beratungsstellen/

Interdisciplinary help for prenatal heart defects is available under https://www.fetal-heart-care.de/
Psychosocial counselling, support and accompaniment in the context of prenatal diagnosis and pregnancy is offered, for example, by donum vitae: https://donumvitae.org/beratung-hilfe/praenatale-diagnostik

Editor: X-Press Journalistenbüro GbR

Gender Notice. The personal designations used in this text always refer equally to female, male and diverse persons. Double/triple naming and gendered designations are used for better readability ected.