Mirjam was born with a ventricular septal defect. The hole had to be closed surgically. Our daughter was just five months old. She recovered quickly from the major operation with heart-lung machine. She was able to attend kindergarten and elementary school normally.

I wonder if one or the other hurdle in school time was related to the early heart surgery.

With great dedication and ambition, she subsequently made her way through even difficult school years. Whether one or the other hurdle in the school years was also related to the early heart surgery? It's hard to say. Today, at any rate, the heart defect plays a subordinate role for her. Mirjam is currently preparing intensively for her Abitur.

Would everything happen again now?

Four years after Mirjam's birth, our daughter Esther was born. At the first routine examinations, there was nothing to indicate a heart defect. Nevertheless, my husband and I took her to a pediatric cardiologist as a precaution. We just wanted to be sure. But then came the shock. The doctor diagnosed an atrial septal defect in Esther. Would everything happen again? We were lucky. In Esther's case, the hole closed by itself in the first year of life, so she was spared an operation. We were very relieved.

We couldn't believe it at first.

In 2009, I was expecting our third child. We couldn't believe it at first: a few weeks before Noah was born, he was diagnosed with transposition of the great arteries (TGA) during an ultrasound. And it didn't stop there. In addition to the TGA, our son had a pulmonary stenosis and, like his big sister, a ventricular septal defect. He was six months old when he had his first heart surgery.

We were overjoyed when we were finally able to participate in family-oriented rehab together.

Two more major surgeries followed. The heart surgeries and necessary checkups kept us all on our toes and on a short leash for many years. We were overjoyed when we were finally able to attend a family-oriented rehab together in the summer of 2017. Noah is now eight years old and still very small and slight. But cognitively and motorically, he is fit. And he loves going to school.

Will the change from the familiar pediatric cardiologist to the ACHD center be easy?

As Mirjam grows up, new questions naturally come into our focus. What's next  for her in terms of cardiology care? Since her heart surgery as a baby, she has not been in the hospital, but has been cared for by a pediatric cardiologist in private practice. When she is eighteen, she will need to transfer to the ACHD center. It is attached to the children's hospital where she had her surgery. Will it be easy for her to switch from the familiar pediatric cardiologist to the ACHD center? We're not so sure.

We hope that diagnosis and treatment will continue to improve for our children and future generations.

We have registered our children in the heart registry because we feel it is important to gather as much data as possible for research. From this, we can learn and have hope that diagnostics and treatment will continue to improve for our children and future generations. When we learned of Noah's diagnosis, we wondered how it could be that all of our children have a congenital heart defect. There is no other child with a congenital heart disease far and wide in our family. No one could answer this question for us. That is why we participated in the family-based study of the Competence Network for Congenital Heart Defects to investigate the causes of heart defects. My husband and I hope that one day our children will be able to be parents of healthy children.