Prenatal diagnosis congenital heart disease - what now?A study to assess anxiety, stress and depression after the diagnosis

Thanks to technical advances in prenatal diagnostics, it is possible to diagnose a congenital heart disease (CHD) in an unborn child already during pregnancy. Cardiac ultrasound of the unborn child is the established procedure for an early diagnosis of congenital heart disease. This allows parents to receive early, comprehensive counselling regarding the further course of pregnancy and prognosis of their unborn child with CHD.

At the same time, this early diagnosis can also be an emotional burden for the expectant parents, especially for the expectant mother. After the diagnosis of congenital heart disease, many parents feel left alone, as there is currently no structured support program in Germany to provide parents with e.g. interdisciplinary counselling or emotional support. The aim of our study is to address this care gap by acquiring scientific knowledge on the emotional state of expectant mothers following a prenatal diagnosis of congenital heart disease.

In our study, we interview expectant mothers whose child was diagnosed with a congenital heart disease during prenatal diagnostics.

On two dates before birth, we ask the expectant mothers to answer questions about their emotional state. The survey is completely digital; a link is sent to the participants which takes them to a questionnaire about their current feelings. Completion of the questions takes between 5-15 minutes.

In addition, we analyse medical data of mother and child collected during prenatal diagnostics and prenatal care. After birth, we ask the maternity clinic for the examination results of the newborn. If heart surgery is necessary, we again digitally record the mother's emotional state and the child's medical data. We compare the survey data on symptoms of depression, anxiety and stress with the data of pregnant women without a prenatal diagnosis of congenital heart disease. Medical data are compared with those of newborns who  diagnosed with congenital heart disease after birth. All data is pseudonymised and participants can discontinue participation at any time. The exact procedure is shown in the graphic (see below).

The study is conducted by the Department of Congenital Heart Disease - Pediatric Cardiology at Deutsches Herzzentrum der Charité (DHZC).

We also cooperate with various prenatal diagnostics practices in Berlin, who inform potential study participants about our study.

Our study was thoroughly reviewed and approved by the ethics committee of the Charité.
The Else Kröner-Fresenius Foundation is funding the project.

We want to understand how the diagnosis of a congenital heart disease of the child affects the emotional state of the expectant mother and how this is related to the further development of the child.

In this way we want to

• create the scientific basis for the development of targeted family-oriented support services for the affected families,
• optimise the interdisciplinary medical counselling of families by prenatal diagnosticians and paediatric cardiologists,
• close the existing gap in care for pregnant women  with a prenatal diagnosis congenital heart disease of their child and improve their clinical care.