It seems to be a normal desire. The desire to know whats going on in your child’s head. What are they thinking? Why are they behaving the way that they are?
For some parents the desire to know whats going on in your child’s head takes on an entirely different dynamic.
Within John’s first month of life he was diagnosed with Hydrocephalus.
Hydrocephalus, also known as “water on the brain”, is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles (cavities) of the brain. This may cause increased intracranial pressure inside the skull which can cause:
- progressive enlargement of the head,
- convulsion,
- mental disability, and
- in some cases death.
Treatment for Hydrocephalus in most cases involves the surgical placement of a shunt which drains excess CSF from the brain into another body cavity where it can be harmlessly reabsorbed by body.
John was a very lucky. He was diagnosed while still under the care of the doctors, nurses and respiratory therapists at the St. Joseph Mercy Ann Arbor Hospital NICU. He was referred to the wonderful Neurosurgery team at DMC Children’s Hospital and received his first surgery while he was just over a month old.
John will need to monitor his hydrocephalus for the remainder of his life. Complications due to infection are always a possibility within a year of shunt insertions and revisions. Shunt malfunctions are also all too common (as we now know) and necessitate future surgical revisions. John has already had to endure one revision just over a year since his initial shunt placement.
Unfortunately, treatment of hydrocephalus has not experienced much in the way of innovation in recent years. Shunt technology has changed very little since the 1950s. To put that in perspective shunt technology has remain basically the same since:
- the Detroit Lions last won a NFL championship (prior to the advent of the Superbowl)
- Detroit experienced its peak population (1,849,568 people) in the 1950 census
- Ford launched the Edsel brand
While hydrocephalus is not the most well known condition its effects are felt my more families than you may realize.
- Hydrocephalus is still the number one reason for brain surgery among children.
- Every 15 minutes, another shunt surgery is performed.
- 1 to 2 in every 1,000 children born this year will live a lifetime with hydrocephalus.
- Close to 5% of people diagnosed with Parkinson’s or Alzheimer’s actually have hydrocephalus
With better funding for research by organizations such as the Hydrocephalus Association a future with more innovative treatments and possibly a cure for hydrocephalus is possible.
That is why we are walking at this years Metro Detroit Hydrocephalus Walk. Please consider donating to my walk to help ensure a better future for those experiencing this condition.
Your time, support, funds and love will help us provide support, education, and advocacy; and further the effort to create innovative research for a cure for hydrocephalus.