Dandy Walker Syndrome
Paul Bunce and his wife Christine have 17 years experience of living with Dandy Walker Syndrome. They discovered that their son, James, now 17 had the condition during a scan, 37 weeks into the pregnancy. Here Christine talks about Dandy Walker and how it has affected James.
“I was scanned when I was 37 weeks pregnant because my midwife thought I was small for my dates. I barely looked pregnant really. They found a large cyst on the base of James's brain, and also found that his heart wasn't functioning properly either.
We had to wait a few days before there was anyone available to talk to us and explain what exactly was wrong. The cyst was very large and the prognosis wasn't good.
We were told - quite brutally - that James would most likely have difficulty with balance, walking and talking. It was also thought likely that he would have continence problems too. Thankfully he's proved the doctors wrong on all these counts.
James was born at 38 weeks, by normal delivery, weighing 5 pounds. Two of the four valves in his heart weren't working properly, but we were told just to keep an eye on him and were able to take him home ten days later.
Heart problems can be associated with Dandy Walker, but because the condition is quite rare, very little research seems to have ever been carried out. The neurologist we first saw had heard of the condition, but knew very little about it.
James was a very irritable baby. He hardly slept and spent most of the day and night screaming. Nothing I could do would calm him down. He was a terrible feeder too. It would take two hours to get him to drink a couple of ounces of milk.
He's a hyperactive child, and always was, managing to roll over at six weeks old. But he was much later than other children in sitting and standing, and didn't walk until 21 months.
James' shunt was fitted when he was six months old. We had been told that it was likely that he would develop hydrocephalus and we had begun to notice that he lay with his head to one side, and his forehead began to look very puffy.
When he was ten we were told by a cardiologist that his heart was so weak because of several holes in his heart we had to be very careful when he did exercise. Again, because of a lack of research and knowledge of Dandy Walker, we never knew if the two conditions were related.
James had major open heart surgery in 1999. His heart still isn't perfect, but it functions well enough.
Dandy Walker and hydrocephalus have affected James quite a lot. He's hyperactive and had a lot of behavioural problems at school. He would often get up from his chair and start walking around the classroom, being disruptive, and even though he was finally statemented, his school found him hard to deal with.
We were even told that the school would never be able to educate him, but again, James has proved everyone wrong by passing his GCSE's and is now at college, studying Health and Social Care.
Of course now he's older James goes off on his own, or with friends, but we still feel quite protective and keep a closer eye on him than perhaps we normally would.
He's also had problems with name calling at school. Some children found out that he had hydrocephalus, and through ignorance, started calling him “Half Brain.” It did knock his confidence, but James has dealt with it all very well considering. In hindsight we should have asked someone from ASBAH to go into the school to talk to the children.