paediatrics Brussels 17

The family experience

• It was a land of inference and insinuation. . . On the one hand we had nurses who treated our daughter as if she could see, hear and understand everything; on the other we had those who clearly felt she had been reduced to the level of an infant. If communications were hampered by a lack of time, ignorance and politeness, then they were stalled even more by the constant presence of my daughter, who for all but the first two days of the four months we were in hospital was unable to communicate. No one could guess what she might or might not want to hear... • What we needed at this time was access to independent written material about the complications that can follow brain injury. We felt we were trying to piece together a picture when we only had a few pieces of the jigsaw. . . • . . . Further enlightenment came when a doctor gave us a book on neurosurgery, with a section marked for us to read. . . the marked section wasabout cerebellar mutism, the syndrome affecting Amy. All the worrying symptoms – the total inability to communicate, the obsessive, repetitive tics, the almost autistic withdrawal from the world – were described.We were not in unchartered waters after all. At last we had a map. • . . . When she was first able to communicate, which she did with the aid of a speaking machine, it became apparent that she had taken in quite a lot. She had acquired a medical vocabulary and could even spell most of the words