Coping With Hydrocephalus

Our son was born in warwickshire in february 1972 and went to live in Sardinia when one month old. Unfortunately the hospital in the uk did not pick up hydrocephalus when he was born and after 2 months in Sardinia his head had started to grow in size, he was very drowsy and then began to vomit. A friend who was a doctor told us to take him to hospital where he stayed for another period of time with nothing being done to our baby and the joins in his skull actually starting to open due to the pressure. One can only imagine the terrible pain he experienced. the hospital in 1977 hadn’t a clue what was wrong with our son and advised us to take him to a private clinic in Rome which we did.

it was a terrifying experience. On arrival the doctors immediately drained the fluid and operated the next day with dramatic improvements. We returned to the UK after this. The first shunt lasted for 12 years and was then replaced but in a different part of the body. He has had many replacements since. The one at the moment has worked for 19 years and I hope it keeps going. due to all the surgery and the scar tissue our son has developed seizures but these are very well controlled with medication. Due to the pressure on his brain before his operation his eye sight was affected and he does have learning difficulties but he leads a very full and active life. When he was born there was very little information available on hydrocephalus so to be able to read so much about the condition really helps as it is so important that it is picked up early in order to avoid any damage.