Haylea Lynn Blank : How has having hydrocephalus impacted my life?
I was born premature at twenty-six weeks of gestation. I was one of twins. We were both born at twenty-six weeks because my mom went into premature labor, which could not be controlled with medicine in the hospital. Due to being born early, I had a fourth-degree bleed in my head that resulted in obstructive hydrocephalus. I was born on May 13, 1989 along with my twin sister. My sister passed after five days due to immature lung development. I had immature lungs that could be treated with a drug called Surfactant and ventilation. I was maintained on a ventilator in the hospital until my lungs matured and I was able to breathe on my own. Following several CT scans my Obstructive Acquired Non-Communicating Hydrocephalus became apparent to the doctor’s at North Carolina Wake Forest Baptist Medical Center. I had my first ventricular-peritoneal (VP) shunt around one month old. I had numerous revisions from June 1989 to December 2002; when everything changed in my life. I found out I also have Agenesis of the Corpus Callosum and possible Dandy-Walker Syndrome (associated with the fourth ventricle of the brain). I developed
abdominal pseudo cysts in my abdomen which continued to feel up my distal shunt catheter which caused several problems for my shunt in 2001 and 2002. As of December 27, 2002- I have been SHUNT FREE! I had the alternative surgery for Hydrocephalus called the Endoscopic Third Ventriculostomy thanks to my current Neurosurgeon Dr. Martin M. Henegar.
I thank God everyday that I am SHUNT FREE, but I also worry that the burr holes will close up one day because of scar tissue. The end of my journey did not STOP on Dec 27, 2002, because I was back in the hospital in January 2006, June 2006, Aug 4th 2006, Aug 30th 2006, and Aug 4th 2008 with scar tissue blocking over the ETV burr holes and dealing with issues from the Dandy-Walker and/or arachnoid cyst (which was part of my brain (4th ventricle)) and Hydrocephalus. Even without the tubes and shunt problems, Hydrocephalus is NOT cured… their needs to be more research done so everyone with Hydrocephalus or has family members and friends with Hydrocephalus can lead a “normal” life without brain surgery at least every 2 years based on statistics.
I will say it is amazing how we heal fast after BRAIN surgery, who knew after the first day or so. It is a miracle we bounce back pretty quickly and get back to our “normal” lives. We are special and everyone deals with Hydrocephalus differently, I was fortunate to graduate high school on time in June 2007 and go start right into college. I am currently pursuing an Associate’s degree in Health Information Technology dealing with Medical Records. I am working part time at a local hospital in the Medical Records department pursuing my dreams and living life to the fullest.
Finding a Cure for Hydrocephalus is PRICELESS! I hope one day we will not have to worry when we start to have headaches is our shunt failing and/or is the ETV closing up. There needs to be a CURE so future generations to don’t have to have brain surgery all the time! There needs to be MORE Research done to find other alternatives to ETV and shunts. I think at last count I have had twenty-one brain surgeries that I know of. It is crazy to believe that a lot of people have seen the Hospital and/or the Operating Room more than they have seen birthday. We need to find a CURE for HYDROCEPHALUS because everyone no matter what age should not have to live with the unknown and the future possibilities of more surgery.