Join Charlotte Mom’s as They WALK to Support Hydrocephalus Research and Services

Guest Post By: Summer Minchew

A wise friend once told me: It wouldn’t be parenthood without drama. As parents, I know we’ve all had to endure minor-medical dramas; multiple calls to the pediatrician’s office, Google searches about a mysterious rash, late night pharmacy runs. My family has had its fair share of those incidents and then some: my son had emergency brain surgery when he was 14 weeks old. He seemed to us a normal happy baby one day and the next he was diagnosed with a neurological condition called hydrocephalus which is an excess of cerebral spinal fluid (CSF) that causes pressure on the brain. It is estimated that over one million Americans are affected by hydrocephalus, which can occur in-utero, during infancy or anytime within one’s life. During the operation, our son’s neurosurgeon installed a device called a shunt which is essentially a drainage line that reroutes the flow of CSF from the brain to either the abdomen or the heart.

People with hydrocephalus that require the help of a shunt will have it for the rest of their lives. While shunts are a clinically proven technology, obstruction and malfunction continue to be an issue affecting a significant portion of the treated population. In fact, the shunt has one of the highest complication rates of any medical implant. At any time, and without warning, a shunt complication can require medical intervention which may include additional surgeries. Over 40,000 shunt related operations are performed every year in the US – this averages out to one every 13 minutes and over 100 per day. Needless to say, we will always have to be watchful of any symptoms that could indicate a shunt complication in our son.

My son’s ordeals lead me to the non-profit organization, The Hydrocephalus Association. I have been involved with HA for the past two years as a Group Leader for the Charlotte area; organizing events for the local hydrocephalus community and promoting awareness both within our community and beyond. Through the organization I have met many parents and individuals who have also been affected by hydrocephalus. One family, the Tufts, whose son Christian was diagnosed with hydrocephalus and Dandy Walker syndrome during his first trimester in the womb, was given little hope by doctors. Today, at the miraculous age of seven, Christian is in the second grade. Although he has endured several surgeries and suffers from seizures, he has never met a stranger and is a blessing to his family and everyone he meets. You can meet him and learn more about Dandy Walker with hydrocephalus on his Facebook page: https://www.facebook.com/ILOVECHRISTIANTUFT

This year, thanks to the tireless efforts of volunteers like Christian’s mom, Tianda Tufts and WALK Chairs: Christy Ruth and Susan Slattery-Rogers; I am proud to announce that Charlotte will host its Inaugural WALK Event to benefit the Hydrocephalus Association at the Knights Stadium on September 28th. It’s going to be a great family friendly event and we encourage everyone to participate.

Unfortunately, hydrocephalus is under-recognized and research is severely under-funded. For example, in 2011, hydrocephalus received about 23 times LESS funding from the National Institutes of Health than other medical conditions with similar prevalence in the population. Please WALK to increase public awareness about hydrocephalus and ask friends and family to donate in order to help eliminate the challenges of hydrocephalus. There is no charge to participate in the WALK, raise $50 in order to get a WALK t-shirt.

Register today at: http://walk4hydro.kintera.org/charlotte

To learn more about hydrocephalus visit: http://www.hydroassoc.org

Contact WALK co-chairs Susan Slattery-Rogers at 704-488-7434 or Christy Ruth at CharlotteHAWALK@hotmail.com for more information.