Four-year-old Amelie was born with a univentricular heart, a severe heart defect. She lives with her parents and her younger sister in Wardenburg, Germany. We talked to Amelie’s mum, Daniela.

When and how did you find out that Amelie has a heart defect?
Amelie was born on January 30, 2007, following a wonderfully uncomplicated pregnancy. The birth was very quick and really great, and her first two days afterwards were also problem-free. Then came the day of the U2, the second regular infant health exam. The doctor examined Amelie and told us that she had heard an irregular heart sound that should be checked by a cardiologist. The cardiologist did an ultrasound and consulted with a colleague, who also did an ultrasound. After what felt like 100 hours, he looked at us and said: “Your daughter has a severe heart defect.” I will never forget that sentence, as long as I live. I had no idea what it meant and what we were going to face. After that news, I only functioned, like a robot. Everything just rushed past me.

What happened then?
Amelie immediately received medical care and spent the night at the intensive care unit. The next day, she was transferred to the university clinic in Kiel. The doctors there then explained exactly what was wrong with her heart: she has a univentricular heart, which means that her cardiac septum is missing completely. In addition to that, her left heart chamber is only partially developed, the major arteries are transposed, etc. We were very worried whether our daughter would be able to survive with just one ventricle, and about the consequences this heart defect would have for her.

When did Amelie have surgery?
Amelie was only six days old when she had the first surgery. It did not improve her condition, so one week later, she had the second surgery. That was followed by six long weeks in hospital, after which we finally were allowed to take her home with us for the very first time, which was wonderful. We were very happy, until we noticed that she didn’t use one hand properly. The doctors diagnosed her with a right-sided paralysis due to cerebral haemorrhage – another horrible shock. After two more heart surgeries, one at five months and one at three years, things are now finally taking a turn for the better.

How did you manage these difficult times as a family?
During the very hard early period, we had lots of help from family and friends. Amelie is our firstborn, so we were able to dedicate all our attention to her. Today, she is four years old and quite the little whirlwind. She goes to kindergarten just like other children. You wouldn’t know that she has a heart defect just by looking at her. She just can’t run or play football quite as good as other kids. But I’m full of hope and optimism that this will get better one day, too.

What are your hopes for the future?
Surgeries for children with a severe heart defect like Amelie’s have become possible only a few years ago. We are extremely glad that there are all these possibilities now, and we hope that Amelie will continue to make such great progress.