[Congressional Record Volume 155, Number 63 (Tuesday, April 28, 2009)]
[Extensions of Remarks]
[Pages E1000-E1001]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                     HYDROCEPHALUS AWARENESS MONTH

                                 ______
                                 

                         HON. MICHELE BACHMANN

                              of minnesota

                    in the house of representatives

                        Tuesday, April 28, 2009

  Mrs. BACHMANN. Madam Speaker, hydrocephalus, or water on the brain, 
is a medical condition that results in an abnormal accumulation of 
cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. 
Sadly, the prognosis for individuals afflicted with hydrocephalus is 
difficult predict and often fatal. Moreover, while this condition 
affects approximately 1 in every 500 births, very few people are aware 
of it.
  Indeed, the National Institute of Neurological Disorders and Stroke 
(NINDS) is currently conducting research related to hydrocephalus 
prevention and treatment. However, more must be done at the community 
level to educate individual Americans about this surprisingly prevalent 
disorder. Recognizing September as National Hydrocephalus Awareness 
Month will bring this disease to the public's attention and encourage 
the discussions necessary to more effectively address the devastating 
effects of this disease and provide support to families who live with 
it each day.
  For example, currently, the most common form of treatment for 
hydrocephalus involves the insertion of a shunt in order to maintain 
the flow of CSF from the brain. This outdated practice often results in 
complications that can jeopardize the life of the, often very young, 
patient. Through increased awareness and education, we will take the 
steps needed to modernize the treatment of hydrocephalus and move 
toward a cure. As one parent summarized, ``My son, and all the other 
children who suffer from Hydrocephalus, are literally 12-15 hours from 
irreversible damage, if not death, if a shunt failure was to go 
undetected or left

[[Page E1001]]

untreated. There has got to be a better treatment out there, if not an 
outright cure, we just have to find it.''
  I'd like to share the thoughts of a father whose toddler son suffers 
from Hydrocephalus, Michael Illions: ``Our son Cole was born on July 
25, 2005. We were prepared for his diagnosis of hydrocephalus since 
March of that year when we learned about it at a routine ultrasound. We 
interviewed Neurosurgeons and discussed our options for the treatment 
of the hydrocephalus for Cole which in his case would mean brain 
surgery at 1 day old. The most common treatment for hydrocephalus is 
the placement of a shunt into the ventricles of the brain to drain 
excess Cerebral Spinal Fluid. Cole had his first shunt surgery on July 
26, 2005 at just one day old. 10 more brain surgeries and 
hospitalizations would follow in the next year, including 2 major shunt 
infections.
  Life with a child living with hydrocephalus is very unpredictable. We 
have had to alter our lives in many ways. For the first year, we 
literally slept with a change of clothes right near the bed and the car 
keys on the night stand, just in case we had to make a late night visit 
to the ER. As parents, you are constantly observing your child for 
shunt failure and things that regular parents go through like stomach 
viruses and fevers could mean death for your child if not acted on 
immediately. We never travel to far from home for fear that we will 
need our hospital and Neurosurgeon in an emergency and when we do 
venture away, we always know where the closest hospital is.
  Cole has experienced development delays due to his hydrocephalus, 
multiple surgeries and so much time spent in the hospital during his 
first year of life. He didn't walk till he was nearly 3 years old and 
he still doesn't talk. However, he started Preschool in September and 
is doing amazingly well. He runs, plays, laughs, and plays with other 
children just like any other 3 1/2 year old boy. Yet, as common as 
hydrocephalus is; 1 in 500 births, there are still so many people who 
have no idea what it is. The experience of having a child with this 
condition has enriched our lives beyond measure. We have met hundred of 
wonderful people, started our own support group in our state, and just 
recently started the Pediatric Hydrocephalus Foundation, Inc. It is our 
goal to educate the rest of the United States about this condition and 
the millions of people living with it.''

                          ____________________