Justin is a happy seven year old. Like any other seven year old boy, he likes to play soccer, basketball and baseball. He takes piano lessons (and grumbles about having to practice). He is a very normal child, he just happens to have hydrocephalus.
Born at 26 weeks, Justin had a grade 3 brain bleed when he was just a few days old, which left him with hydrocephalus. In addition to that, he had so many other medical problems that the fact that he survived is a miracle.
Justin was on oxygen for the first eleven months of his life. He moved very little and we started physical therapy at the age of six months (his adjusted age was 2 1/2 months). At eleven months of age, he finally unclenched his fist and reached for something. At sixteen months, he sat up, and started walking at 22 months. He didn't make many sounds so at the age of 18 months, he started speech therapy. This continued for the next five years. At age 3, he started attending preschool for the severely handicapped. After two years there, he was able to go to a school that specialized in speech. At the end of that year, he exited the speech program and was able to go to kindergarten at a regular school and be in a regular classroom situation. He is still receiving occupational therapy. Justin has mild cerebral palsy and does not yet cross midline. He has learned to compensate for his physical problems and is able to play the sports he loves so much and most people don't realize that he has a problem. Justin gives 100% of himself to whatever he is doing and disability is not a word in our vocabulary.
We didn't worry too much about hydrocephalus, but we decided early on to learn as much as we could about it. And we learned of the repeated shunt revisions and other problems children have. Since hydrocephalus isn't a common household word, we decided to advocate for hydrocephalus awareness every chance we could, all the while hoping that Justin was going to be one of the lucky children who would not need repeated surgeries.
We still consider Justin one of the luckier children because he went seven years without a revision. On July 23, 2010, Justin got up and said he couldn't see. We didn't associate this with his shunt and thought he might have eye strain from playing computer games. We took him to his eye doctor who immediately checked for pressure and we found ourselves in the hospital where he had a complete replacement. Six weeks later, the flu was going around and when he started showing symptoms, this is what we thought he had. We took him to the local ER where the doctor there also thought he had the flu, but decided to admit him because of his history, (Justin's CT scans are always normal).
His pediatrician was not comfortable with the flu diagnosis and made the decision to send him to Sacramento, so we made the trip by ambulance and he was in surgery an hour after we got there. Seven weeks later, we found ourselves back at the local ER with the same flu like symptoms. This time, Justin's eye doctor's husband was the ER physician and he immediately checked for pressure and so we found ourselves once more in an ambulance headed for Sacramento. On October 31, he had another revision. This time though instead of feeling better right away, Justin kept getting sicker and sicker. On November 1, he was back in surgery where they found that the catheter had not gone directly in but had gone in at angle and into brain tissue. As soon as this was corrected, he started improving.
Justin has now had, in his lifetime, a total of 12 surgeries - six of those have been brain surgeries (four within a thirteen week period). This is no way for a child to have to live. We desperately need more research and a cure for this condition.
On a positive note, Justin's school has held two hydrocephalus awareness walks. The children, grades K-3 are learning at an early age what it is. Justin was nervous about going back to school with his shaved head and the administration said he could wear a hat as long as he felt he needed to. He wore his hat only half of one day and felt comfortable enough to take it off and has not worn it since. Everyone at school, staff and students have been very compassionate and they have not asked him questions as he does not like to talk about this.