Hydrocephalus patient raises funds for innovative integrated treatment

When Scout O’Donnell was born, her parents named her after Scout Finch, from the novel, “To Kill a Mockingbird,” with the wish that like this fictional character, their daughter would stand up for her beliefs.

On a fateful day in early 2018, at age 18, O’Donnell collapsed from severe pressure from fluid building up in her brain. This event also led to O’Donnell discovering the cause for which she would fight: ensuring patients with hydrocephalus are given more holistic treatment for related mental health issues.

While most common in infants and older adults, hydrocephalus can affect anyone at any age and occurs when cerebral fluid does not drain properly. Approximately two million to three million Americans have this condition, and the most overt symptoms are headache, vision impairment, loss of balance, and cognitive issues.

For O’Donnell, the placement of a shunt by Mark Luciano, MD, PhD, director of the Johns Hopkins Hydrocephalus and Cerebral Fluid Center, improved the regulation and release of this fluid so it could be reabsorbed by the body and removed her from immediate danger, but she still experienced years of challenges.

“Outside of the doctor’s offices, I faced even more hurdles in the real world living with this condition. When I got diagnosed, I felt like I was given the impossible task of living a normal life with an abnormal condition, and the stress of constantly trying to fit in this world only made my cognitive and psychiatric symptoms worse,” she says.

Scout explains once she also started working with neuropsychiatrist Matthew Peters, Med ’11 (MD), director of Clinical Services, Psychiatry and Behavioral Sciences, at the Johns Hopkins Bayview Medical Center, it became evident that her hydrocephalus and mood disorder symptoms were interrelated.

“Dr. Luciano and Dr. Peters figured out that my mental health symptoms were fluctuating in perfect timing with the pressure in my brain,” says O’Donnell, who participated in an extended blind study with Luciano where he made a series of undisclosed shunt adjustments, to remove any placebo effect and observe patterns with O’Donnell’s cognitive and mood symptoms.

“We already know that people with hydrocephalus, if they have any other neurological or psychological problem, it can exacerbate them,” says Luciano. “For example, if you’re prone to be depressed, you’ll be more depressed, and hydrocephalus doesn’t allow the sort of adaptation in your brain to get over depression. It works in both directions, and I believe it is a long time coming that we studied it carefully.”

After a second surgery with Luciano to embed a gravity-controlled device that increases control of her cerebral fluid levels based on the position of her body, O’Donnell’s overall health improved dramatically, and she began her efforts as a medical advocate and spokesperson for those suffering from both hydrocephalus and mental health diagnoses.

Working closely with her mother, Kemi, and continuing a legacy of generational philanthropy, O’Donnell is currently engaged in an ASPIRE campaign to raise funds to research and implement an innovative protocol to promote a more collaborative approach between Neurosurgery and Neuropsychiatry. The new process would provide patients with a mental health assessment at the point of hydrocephalus diagnosis, establishing a baseline for longitudinal treatment and helping patients traverse pre-op and post-surgical stress.

“If you have people coming into your clinic, they receive a hydrocephalus diagnosis, and they have these psychiatric symptoms at the time of presentation. Can you do something to treat those symptoms upfront while they’re being considered for surgery,” Peters explains the hypothesis. “Does that proactive treatment change the response to surgery in a positive way, and then on the other side of it, does properly treating this with surgical intervention resolve some of the cognitive symptoms or other neuropsychiatric symptoms?”

“Scout has really played a large role in this proposal because she’s really been able to nicely articulate that when her shunt seems to be working properly, from a cognitive and a mental health standpoint, she feels much better,” Peters adds.

Stage one of the research project involves Peters’ team reviewing existing medical records of patients who received shunts to find indicators of neuropsychiatric complications and empirically establish prevalence of a relationship between the conditions. Based on the results, Neuropsychiatry and Neurosurgical teams will then develop a screening process to help newly diagnosed hydrocephalus patients understand possible mood or cognitive symptoms they may be experiencing. Treatment referrals will follow as needed.

“Without philanthropic support, developing that flow where someone has time held specifically to see these patients at the point of diagnosis is nearly impossible,” Peters says.

“And this whole idea of better coordination between the disciplines overall is a very important aspect. I don’t know of any other institution that does it in any consistent or systematic way,” says Luciano.

While O’Donnell still faces some trials managing her health, she has written a book of poetry and is now preparing to pursue a degree in digital communications and media and says being an advocate will continue to be a lifelong mission for her.

“I speak on behalf of all people out there who were given a mental health diagnosis with an unknown neurological cause. We need this research to start shedding light on the unexplored corners of this widespread condition so that those with so many questions, but no voice, can finally be answered and heard,” she says.