On Monday, July 26, 2016, The Learning Channel aired an episode entitled, “My Baby’s Head Won’t Stop Growing.” The episode featured the stories of three children in different parts of the world living with hydrocephalus since infancy. Many may remember the story of Roona Begum from India who elicited an outpouring of international financial support for her impoverished family so that Roona could receive treatment. For Roona, this entailed the placement of a shunt after her head was drained from an excessive amount of fluid that had distended her skull to unlivable proportions. Across the globe in the United States, another little girl received a shunt to treat congenital hydrocephalus. Parker, now 8, is the daughter of Amy and Jeff Hendrix, two dedicated parents and sources of support not just to Parker, but to the larger hydrocephalus community. Amy is the leader of the Hydrocephalus Association (HA) Community Network in Oklahoma. The final story followed a young boy named Lyndos in Uganda who received an endoscopic third ventriculostomy with choroid plexus cauterization (ETV/CPC), a surgical technique that, if successful, can allow an individual to live without the dependency on a shunt to drain fluid from the brain.
The episode did a great job educating the general public on hydrocephalus, a condition that is slowly becoming more recognized as a significant medical condition facing over one million Americans. Hydrocephalus is a neurological condition characterized by excessive accumulation of fluid within the ventricles of the brain. There is no cure and the only treatment option requires brain surgery. If left untreated, an infant’s head can expand to extreme proportions as the fluid pushes the still disconnected plates of the skull outward. The brain is often compressed against the walls of the skull which can lead to permanent brain damage and either death or a lifetime of physical and cognitive challenges. For most children and many adults impacted by hydrocephalus in the U.S., the regular use of imaging during pregnancy and as a follow up to concerning neurological symptoms or a brain injury often results in early diagnosis of the condition, allowing for treatment intervention and avoiding the head growth we see in children in countries lacking ready access to this diagnostic technology.
Early diagnosis and treatment, as we saw in the case of Parker, does not, however, take away the fear and distress that comes along with the news that one’s child has hydrocephalus. Nor does it avoid the need for repeated brain surgery and the toll that takes on both a child and the parents. The Hydrocephalus Association would like to extend our sincere gratitude to Amy and Jeff for so openly sharing their family’s journey with hydrocephalus. The show found Amy through her active online presence advocating for children with special needs and supporting parents. She does this through her blog, TurtleMom, and by serving as the HA Oklahoma Community Network leader, one of the admins for a closed Facebook group for hydrocephalus, and as an admin for one of the discussion boards on BabyCenter.
“I think that it is very important to spread awareness about hydrocephalus,” responded Amy when asked why she felt it was so important to be a part of the show. “It’s an underfunded, under acknowledged condition. I want to do everything in my power to spread the word. Our kids deserve more than the current options available to them.”
Hydrocephalus was not unheard of to Amy when Parker was first diagnosed in utero through a routine ultrasound. Amy has a godson with hydrocephalus and one of Jeff’s college roommates served as a hospital administrator for the CURE Hospital in Uganda, featured in the episode. As the show highlights, Amy and Jeff did everything in their power to educate themselves about hydrocephalus, the options available for treatment, including stem cell therapy to potentially boost Parker’s cognitive development, and how to be effective advocates for her medical and educational needs. Amy brings this same passion to supporting families across the online space and in person through her work with her local HA Community Network.
“I have been involved with HA at least 5 years, maybe longer, and connected with several members of our community who are adults with hydrocephalus. I have enjoyed the comradery between them and my daughter. It’s also nice to talk to adults about their challenges and gain insights from their experiences so that I can see the future for my daughter. I’ve always felt HA was a super resource from the beginning and that they are invested in anyone living with hydrocephalus across the cause and the age spectrum.”
If you missed the episode, you can watch it on TLC’s YouTube channel. We encourage you to email our support staff if you have questions at firstname.lastname@example.org. Some initial comments we received posed questions about the use of ETV and ETV/CPC to treat hydrocephalus, particularly around who are candidates for the procedures. Below we list resources that can help answer some of these questions. We would like to remind our readers that while ETV and ETV/CPC do allow an individual to live shunt-free if successful, complications can arise with the procedure, sometimes many years down the road. We ask everyone to know the signs of shunt or ETV complications and maintain a good relationship with a neurosurgeon and/or neurologist throughout their life.
Webinar on ETV – Hydrocephalus Treatment Part I: Past, Present, Future of Endoscopic Third Ventriculostomy (ETV) and Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization (ETV/CPC) – March 4, 2015