PRAIRIE GROVE – During a visit to Rush University Medical Center in Chicago, Katie Cook, who was five months pregnant at the time, heard the unsettling news that her first child-to-be had hydrocephalus.
The potentially life-threatening disease, commonly referred to as “water on the brain,” is the abnormal collection of cerebral fluid in the brain that can stunt development. It affects one in every 500 children, according to the National Institute of Neurological Disorders and Stroke.
Cook’s visit with doctors at Rush was three years ago. She was devastated by the news, but she now regards her son, Conor, as a bright, energetic boy who is doing well despite his condition. The 3-year-old had a shunt placed on the right side of his brain two months after his birth. It drains the fluid through a valve that stretches down his neck and into his abdomen. The shunt is the mainstay treatment for hydrocephalus.
The family has adapted to the disease, too. Cook has gone from not knowing anything about hydrocephalus three years ago to promoting and participating in a fundraising event by Illinois’ hydrocephalus support group.
More than 500 people gathered at Soldier Field on Sept. 15 for the Chicago WALK to raise $64,000 for the Hydrocephalus Association, a nationwide advocate for hydrocephalus research and education.
Cook recently sat down with reporter Stephen Di Benedetto to talk about Conor, hydrocephalus and the effects of the disease.
Di Benedetto: Did you know anything about this condition?
Cook: No. We actually were at Sherman [in Elgin], where my original doctor was, and the doctor there said his brain wasn’t forming and that we should consider terminating our pregnancy. We then went to Rush, and they said it was hydrocephalus. They explained what it was and how people can have different severities of it, and how a shunt can help. It’s not necessarily the best thing because it can fail and there can be revisions. But it’s the only thing that they have now.
Di Benedetto: Why is it important for people to know about the condition?
Cook: It’s the most common brain surgery in children. It affects anyone at any age. People who are often diagnosed with Alzheimer’s actually have hydrocephalus because the fluid is blocking those areas of memory. With my personal experiences with Conor, he is a smart, bright boy, so I think it doesn’t exclude him from anything. But he has more challenges, so he will need more education and more things that will help him throughout his life. For research and education purposes, there needs to be more funding for hydrocephalus and for his long-term care. It’s just as common as lupus or Alzheimer’s, but it’s not nearly as known or recognized. It’s kind of a hidden illness.
Di Benedetto: How has Conor coped with it?
Cook: He was a late walker. He didn’t walk until he was 2. He has some fine motor problems. His coordination is off – running, catching – those things that are a given are a little harder for him. He receives occupational therapy, physical therapy, and he receives speech [therapy].
Di Benedetto: How have you coped with it?
Cook: I’m a support group leader. I help run the walks. I’m very immersed in it. We attend conferences where they talk about new things they are trying to create and new research they are doing. I definitely try to stay on top of anything that comes out in the news about it. It kind of controls my life too much. ... I think it’s inevitable, especially when I knew nothing, and I need some sort of reassurance on what to expect and how to prepare myself.
The Cook lowdown
Who she is: Stay-at-home mom; married to Bruce Cook; two children, Conor, 3, and Jacob, 1
Favorite family activity: Being outside – camping, fishing, swimming
Favorite thing to do with Conor: Reading and art projects