I was talking to a young father yesterday who proudly showed me pictures of his one-year-old baby. He told me the baby had been diagnosed with hydrocephalus at birth and had had a shunt placed in his head at two-weeks of age. The baby had had frequent ear infections, the father said, and had had tubes placed in his ear drums. I then asked the father if they had a good pediatrician and the father said he thought so. Then I asked if the doctor had discussed the problems which could result with hydrocephalus. "No", the man said. "I don't know anything about that." I was appalled!
Having cared for over one hundred children with hydrocephalus in a spina bifida clinic, I know the problems and complications well. The primary concern is shunt failure and the other major concern is meningitis. If, for example, the baby seemed ill and the doctor or his nurse said to go to the ER or to come to the office in the morning, the baby could be dead. I explained to the father that he and his wife must be aggressive about demanding that the doctor see the baby at any hour if there were problems. ER doctors generally have little pediatric training and so might not understand how quickly a baby with hydrocephalus can die.
I cannot imagine any physician not going over the complications of hydrocephalus. Medicine should not just be about ordering tests and prescribing medicine, it should be about looking at prevention and the whole picture.
This is really helpful, its good for one to understand a disease in a person they are caring for.
Posted by: kacy | 06/20/2017 at 12:26 AM