On January 23rd, during the Weekend Update segment on NBC’s Saturday Night Live, Michael Che used the terms “window-licking water heads” to describe followers of Donald Trump. It caused our hydrocephalus community to take notice. What Che probably doesn’t know is that “water heads” was a common derogatory term prior to the mid-60’s for people suffering from untreated hydrocephalus.
Hydrocephalus is a condition where fluid accumulates in the brain. Children who were born with hydrocephalus or who acquired it soon after birth from a brain injury or infection, among other reasons, had large heads due to the unfused bones of the infant and toddler skull expanding to allow for the additional fluid and accompanying swelling of a brain under extreme pressure. The compression of the brain within the skull cavity and the swelling in response caused significant cognitive and physical disabilities. For many, it led to an early death. In the 1960s, a medical device invented by a father became available commercially to treat individuals, both infants and adults, with hydrocephalus. The shunt drains the excess fluid from the brain and allows the skull bones to fuse and, for the most part, for “normal” head size development to occur.
Have you ever wondered why a newborn child has their head measured at their check-ups through the first couple years of life?
Since the introduction of the shunt as a treatment option for hydrocephalus, the term “water head” became less popular and, ultimately, disassociated with hydrocephalus. For the over 1 million Americans living with hydrocephalus, however, the term still cuts deep. There is no cure for hydrocephalus. The only treatment requires brain surgery, often multiple over the course of someone’s lifetime. Over 100 brain surgeries is not unheard of for an individual. It can also cause a range of secondary medical, physical, and cognitive challenges including epilepsy, physical impairment, intellectual disabilities ranging from profound deficits to mild learning disorders, memory issues, anxiety, and depression, among others. Individuals living with hydrocephalus live with the constant fear that the next headache could mean a trip to the ER and waking up after yet another brain surgery. It is no way to live.
The Hydrocephalus Association would like to use this opportunity to ask everyone to learn more about hydrocephalus and to get involved in helping us raise awareness for this life-altering condition. Our mission is to promote a cure for hydrocephalus and improve the lives of those affected by the condition. As the largest private funder of hydrocephalus research in the country, we are determined to accelerate the development and implementation of innovative, cure-focused research that will dramatically change the lives of patients now and in the future. The only treatment option for our community should not require brain surgery.