Like most 7-year-olds in Carroll County, Gemma Moorhead, spends her time completing her homework, learning how to ride her bike and displaying innate curiosity about the world around her. But she was one out of every 770 babies diagnosed with hydrocephalus.
Hydrocephalus is a neurological condition caused by built-up fluid that puts pressure on the brain. After being born at just 28 weeks, weighing 2.9 pounds, Gemma has undergone nine brain surgeries. She knows there may be more in future.
Gemma has no external physical differences from her peers because of hydrocephalus, but underneath her skin she has a tube that connects from her scalp and passes down through her neck and chest.
“I have a shunt and it’s used to help drain the water out from under my scalp,” said Gemma. “Sometimes, I’m happy that I have a shunt because it’s helping me stay alive and if I did not have a shunt it would make my hydrocephalus worse.”
Gemma lives with her mom, Gina, her dad and two older sisters in Sykesville’s Patapsco Valley Overlook. There, a canopy of Christmas lights is strung from about 18 homes from house to house advocating for people with hydrocephalus.
“Gemma Moorhead is the ‘mayor’ of our street. And her glow is brighter than any holiday lights and she is on 365 days a year –– 366 in this leap year,” said Tony Wood, Gemma’s neighbor –– where they both live on the same street.
“As a community, we may have our differences. But for the past three years, we put all that away to support Gemma and others affected by hydrocephalus because they deserve it. You can look at Gemma and instantly be reminded at how precious life can be.”
He further explained that stringing the holiday lights from each house was no easy task in the midst of a pandemic.
“I try to help coordinate with everyone and make sure that we can get the lights. Me and some of the other guys in the neighborhood, get up there and hang them,” said Wood. “After that, the hardest is getting up there to change one of the bulbs if they go out.”
According to Gina, Wood is one of Gemma’s greatest supporters. She describes him as her “biggest cheerleader” and explained that having the communal support of people like him around helps her during the darker times of Gemma’s life.
“The weight of being a parent with a kid with hydrocephalus is a lot,” said Gina. “You can have really scary times where your child’s shunt just has back-to-back malfunctions, and you really need to dig down deep for that strength. And then you have those years or blocks of time where everything seems so calm, but you’re still just waiting for something to happen.”
According to the Hydrocephalus Association (HA), a national nonprofit organization based in Bethesda, “an estimated 50% of shunts in the pediatric population fail within two years of placement and repeated neurosurgical operations are often required.” There are approximately 10,000 pediatric hospital admissions for shunt malfunctions each year.
With over 1 million Americans living with hydrocephalus, anyone, at any age can develop the incurable condition, and potentially increase that number. The association actively seeks to spread awareness and develop federal funding for more research.
“Most people have never heard of hydrocephalus and because you don’t physically see it, very little is known. And because there is no official registry, there is no way to officially know how many people in the US actually have [hydrocephalus],” said Amanda Garzon, the national director of program services and communications for HA.
For the past two years, HA has worked with New Jersey Congressman Chris Smith to get a registry for hydrocephalus patients. Although the bill was successful for registering individuals with autism, it was not for people with hydrocephalus.
According to Garzon, since 2009, HA has invested over $12 million in research, making it the largest non-profit, non-governmental funder of hydrocephalus research in the U.S. The organization’s grantees have gone on to secure over $35 million in additional funding to continue their research.
Shenandoah Robinson, often referred to by her patients as “Dody,” is nationally known for research on hydrocephalus, epilepsy and spasticity and serves as Johns Hopkins associate professor of neurosurgery and neurology. She’s also Gemma’s neurosurgeon.
“Currently all of our treatment for hydrocephalus requires surgery. So, we’re doing research to better understand what is causing the hydrocephalus so that we can potentially have non-surgical options,” said Robinson.
Robinson hopes to help a person’s own body recover from the process that led up to hydrocephalus and restore the function of the parts of the brain that control the fluid flow. She would like to take her work to clinical trials withing the next five years.
Since beginning to care for Gemma in 2016, Robinson has seen her about twice a year. She checks-in to observe whether or not Gemma shows any symptoms of a malfunctioning shunt, which include blurred vision or seizures.
Often, kids with hydrocephalus develop comorbidities, or have to function with two or more medical conditions affecting their everyday life, for the rest of their lives. Gemma also has cerebral palsy that affects the left side of her body.
“It makes me worry for that transition from the pediatric world to adult care because I feel that there is more attention and resources, while she’s younger. And I just know that the care is not the same,” said Gina.
According to Garzon, who also has an adult child with the neurological condition, says transitioning can very difficult to navigate both medically and legally after turning 18. Due to the significant changes within adult care, HA makes it their primary goal to assist individuals with the switch, calling it the group’s “biggest advocacy initiative” currently.
Gemma will never be able to vacation or attend college without a brain surgeon close by. She will always have to live lknowing that at any point in time she may have to have her shunt fixed.
For now, she receives her care from Johns Hopkins Hospital, that serves both pediatric and adult patients. Her mom is hopeful that this will make her transition easier and care will improve by the time Gemma begins receiving adult care.
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“There’s a lot of people that don’t understand the significant burden of hydrocephalus and how much we really need to find better and more effective treatments for it,” said Robinson. “Overall, if you look at the funding from organizations like NIH, that goes to the research for hydrocephalus in comparison to the impact that it has, it’s been somewhat underrepresented.”