A long road to diagnosis - living with cerebral palsy

Kathrin was born by caesarean section as a breech baby. Her Apgar scores were very good. Only her sucking reflex did not work at all. I pumped the breast milk and gave it to her with the bottle. I kept this up for six weeks, then I had the feeling that all I was doing was pumping and lapping. After that I switched to normal bottle feeding. Kathrin was very easy to look after. She slept a lot, actually only slept. When I worriedly told other mothers about this, the only response was always that I was glad she was sleeping so much. I always felt that this was not quite normal. Sometimes I even had to wake her up to give her a bottle, otherwise she wouldn't have drunk anything. At the monthly check-ups with the maternity nurse, everything was fine for the first eight months. Kathrin developed very slowly. But still in a way that was acceptable. Then there was a standstill and the attentive nurse sent me to the family doctor for further clarification. After another four months, the GP referred me to the St. Gallen Children's Hospital. In the meantime, I was pregnant again. One afternoon in February, we were allowed to go to the children's hospital for an initial check-up. Before that, however, a proper pregnancy check-up with the gynaecologist was on the agenda. He listened to the heartbeat. As I hadn't heard them the first time, he looked for them again for me. Suddenly he was taken aback and asked me to move to the ultrasound room. I was worried and terrible thoughts ran through my head. After some searching, he found the embryo and everything was fine. I was reassured, even though I hadn't seen the heart myself. My gynecologist looked for it again to show it to me. Suddenly he asked: “Do you know what I've just seen?“ I said no, but I already suspected something. There are two of them! They're having twins! Luckily I was already lying on the bed. I rode home on my bike, completely upset, and told my husband the news. I was glad that my husband came with me to the children's hospital. The doctor examined Kathrin and then made the diagnosis: cerebral palsy. The first thing I wanted to know was how hereditary it was. The doctor reassured me and said I didn't need to worry about the twins. The cause in Kathrin's case could have been a small brain haemorrhage. She prescribed physiotherapy for her. Either at the children's hospital, which the doctor recommended, or at a branch in Gossau. We chose the children's hospital for the therapy. When I asked for further clarification, she said that the brain haemorrhage could be so small that it wouldn't be visible. In addition, Kathrin would have had to be anaesthetized so that she would lie very still. As this would not have changed the therapy, we decided not to have any further examinations. From that day on, nothing in my life was the same again.