The 3rd Annual Greater Chattanooga Hydrocephalus Association Walk will be held at Coolidge Park on Saturday.
More than 6,000 babies, one in six, are born every year that will face a lifetime with the challenges of hydrocephalus. Hydrocephalus is the number one reason for brain surgery among children, and anyone at any time can be diagnosed with hydrocephalus. Right now, there is no prevention and there is no cure.
Story of Chara McLaughen:
When our daughter Ema was diagnosed with hydrocephalus – an abnormal accumulation of cerebral spinal fluid in the brain – I was 36 weeks pregnant – my husband, Hunter, and I were terrified. We had no idea what hydrocephalus would do to our family and what sort of future our daughter faced.
The first few days of her life were “touch and go” with every day bringing a new challenge, including multiple CT scans, MRIs and ultrasounds. We then began our journey of measuring her head size daily, and attempting to act like we didn’t want to do it 10 times a day. We were seen by a neurosurgeon in Birmingham for the first few months of her life every two to four weeks. At five months old, the neurosurgeon at Vanderbilt finally told us we could not put off surgery any longer. She had to have her first brain surgery to have the first shunt placed at just barely five months old.
You can imagine how terrified we were for anyone, no matter what expertise they had, to be doing any type of surgery on our tiny, fragile baby. Although the doctors and nurses performed heroically during that time, we felt very alone. We never would have made it without the love and caring of family and friends and the information and support we received from the Hydrocephalus Association.
The stated mission of the Hydrocephalus Association is "To eliminate the challenges of hydrocephalus by stimulating innovative research and providing support, education and advocacy." Following that surgery, Ema did great. She made it for another five months before her shunt began to malfunction. She struggled for six weeks while doctors attempted to diagnose what her issues were. She lost 25 percent of her body weight and was extremely underweight at that time. She eventually had difficulties with her eyes and the pediatric ophthalmologist in Chattanooga diagnosed her shunt malfunction.
After six long weeks of indecision, we were able to return to Vanderbilt for another brain surgery. She was a new baby after having her shunt revised, at just 11 months old. She then went another six months doing well, without any issues to speak of. At 18 months old, she started having some of the same symptoms that she did at 10 months old. It was at this time that we recognized these symptoms immediately and returned to Vanderbilt for evaluation. After having placed a monitor in her brain through another brain surgery, the doctors were able to determine after another seven days at Vanderbilt that it was another shunt malfunction. She then underwent her fourth brain surgery and third shunt revision at that time.
Fortunately, she did very well and has been healthy since having that last shunt revised until May of this year. We were placed in Vanderbilt’s Pediatric ICU for seven days, where she underwent another brain surgery to determine the cause of her shunt malfunction. At that time, she was able to start a new medication that decreases the production of her spinal fluid. This, in turn, did not result in another shunt revision. We were so thankful (even if she did have to spend her 4th birthday in the ICU at Vanderbilt).
Currently Ema is doing so well --- to date she hasn’t shown any signs of developmental delay. She is in Pre-K4 at Silverdale Preschool. She hasn’t suffered any problems with her shunt since May. (The symptoms of shunt malfunction mimic the flu or other diseases – while the flu isn’t great it’s infinitely preferable to a shunt infection or shunt malfunction.) Unfortunately, hydrocephalus is only controlled – not cured – and life-threatening complications can develop in a heartbeat, keeping us extremely watchful for the tiniest change in her behavior.
In 2009, the Hydrocephalus Association launched a research initiative to learn more about this chronic and challenging condition. Since then HA has committed $2.7 million to research – making it the largest non-profit, non-governmental funder of hydrocephalus research in the U.S. That is why Hunter and I began the HA WALK here in Chattanooga. Last year, our WALK raised over $25,000 thanks to the continued support of our friends and family. We have always been incredibly blessed by the generosity shown by each and every one of them. Our goal for this year is $25,000 for Chattanooga and 350 participants. Our team, Team Ema’s Hope even has its own goal of $2,500.
For obvious reasons we feel this is a very worthwhile cause. More than one million Americans are living with the challenges of this complicated and complex condition, our Walk campaign could help them lead a better life. We receive only about one percent of the federal funding for research for this condition compared to other diseases that receive billions of federal dollars. While this condition has a treatment that has a 50 percent failure rate, it also was invented in 1956 and has not been improved upon much since.
The local website is http://walk4hydro.kintera.org/chattanooga.