The mission of the Hydrocephalus Research Fund is to raise the public’s awareness of Hydrocephalus and to provide funds for research efforts to discover the causes of and provide better treatments for Hydrocephalus.
About the Founders
The Hydrocephalus Research Fund was created by the parents, Corby and Reina Bell, of two children with hydrocephalus. When our son, Jace, was diagnosed with hydrocephalus at two week’s old, we had never heard of the condition. I just remember our pediatrician pulling out one of those huge medical books and showing us a picture that has been burned in my memory ever since. Jace eventually had to have two brain surgeries, his final one at three months old in which he had a shunt system implanted to correct his condition.
The doctors told us what had happened with Jace was just one of those rare things that can happen to anyone. However, much to everyone’s disbelief, in 2007 our daughter, Alina, was diagnosed with hydrocephalus by a prenatal specialist at 37 weeks.
According to our neurosurgeon, Jace’s and Alina’s MRIs are virtually identical. There is obviously some genetic link, but due to a lack of funding and research about hydrocephalus, our doctors cannot explain our situation. Further, there is nothing we can tell our kids about what their chances are of having children of their own with hydrocephalus.
At three weeks old, Alina also had brain surgery to have a shunt system operation. Almost a year later, at 11 months old, she had to have surgery to have the shunt system revised because the tubing in the shunt had become blocked.
Jace is now 5 and Alina is 2, and they are both doing great. However, they will both have to live with this condition for the rest of their lives. Likely, they will both be dependent on the shunt system for the rest of their lives as well, and will always have to live with the knowledge that those shunt systems can fail at any time.
The National Institutes for Health (NIH), which controls most federal funding for these types of conditions, states that the number of people who develop hydrocephalus or who are currently living with it is difficult to establish since there is no national registry or database of people with the condition. However, experts estimate that hydrocephalus affects approximately 1 in every 500 children, which makes Hydrocephalus as common as Down’s syndrome or Juvenile Diabetes, yet the public is largely unaware of the condition.
While Hydrocephalus is as common as Juvenile Diabetes, the NIH funds $300 for every child born with Juvenile Diabetes for research. In contrast, the NIH funds $.60 for every child born with hydrocephalus for research.
It should be no surprise then, that the NIH itself states that the causes of hydrocephalus are not well understood.
This shunt system was developed in 1956 by a father, John Holter, for his son, Casey. The same basic shunt system with incremental advancements is used to treat hydrocephalus today.
In fact, the most common procedure performed by pediatric neurosurgeons in the United States is the surgical implantation of shunt systems. There are over 40,000 hydrocephalus operations performed annually, which equates to about 1 every 15 minutes. Sadly, 70% of those operations are to revise a shunt system which has failed. As a result, shunt operations for hydrocephalus cost over $1 billion a year in the United States.
Research is essential. At the very least, we need better treatments, with more positive long-term outcomes, and diagnostic tests that are accurate, cost-effective, and noninvasive.
We see it as our duty as parents and our social obligation to raise awareness of this condition.
