How it began

When my daughter, Mathilda, was 5 weeks old our lives changed. It began with a seizure, probably caused by a late form of newborn hypocalcaemia. The seizure brought us to hospital for 10 days, to injections, infusions, hard, ugly knots in the head caused by calcium deposits, even to lumbar puncture. It brought pain to Mathilda and fear to her parents. There she stopped growing. There we got to know that, for unknown reasons, she had a slightly raised liver enzyme activity and anaemia. There I encountered the medical system from the other side.

When Mathilda was nearly 2 years old, she was still able to sit in her doll's bed

I am a general practitioner. For many years I have worked mainly as a researcher at the university department of general practice. I already knew a lot about problems in the German healthcare system (and others) and shortcomings in doctor-patient communications. Now I experienced them. I met them in the form of ward physicians who changed almost daily and who were unable to answer our questions on causes and prognosis. One of them asked the senior physician to speak to me. The senior physician said, somewhat reproachfully: “You asked to speak to me.” I had not, and the suggestion that I had made me feel like a difficult patient of the sort that until now had only been the subject of my research.

A difficult time

Mathilda gained little weight, even after a course of oral calcium and magnesium seven times a day. She did not grow, though I went to a breastfeeding counsellor and tried to change the way in which my milk was fed to her. I saw myself as the main problem and sought the advice of a psychologist, but Mathilda did not grow any faster. Of course …