Student Spotlight: Jamie Wright Advocates For Hydrocephalus Awareness

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Jamie Wright, a UTHealth M.D./Ph.D. student, with one of the children who received treatment in Haiti. The volunteer pediatric surgery team is led by David I. Sandberg, M.D.

This story originally appeared on The University of Texas Graduate School of Biomedical Sciences at Houston’s website. Reprinted with permission.

By Office of Public Affairs, The University of Texas Health Science Center at Houston (UTHealth)

Imagine having a neurological condition that most people have never heard of, despite more than a million people in the United States being affected by it. There is no cure or preventative measures you could take if you are diagnosed with this condition. The only treatment option is surgery, but the most common treatment for it, a shunt, has the highest malfunction rate of any medically implanted device with an estimated 50 percent failure rate in the first two years. These are just some of the challenges a person who has hydrocephalus may encounter.

As an M.D./Ph.D. student at The University of Texas Graduate School of Biomedical Sciences at Houston, Jamie Wright is on a mission to educate others about hydrocephalus due to her own experiences living with the condition. Hydrocephalus is an abnormal buildup of cerebrospinal fluid (CSF) in cavities of the brain called ventricles.

“I’ve been given this amazing perspective and I love getting to share it with people,” said Wright, who is in her sixth year at the graduate school, which is a partnership between The University of Health Science Center at Houston (UTHealth) and The University of Texas MD Anderson Cancer Center. “It helps me cope with the challenges to be able to use that perspective.”

Wright’s journey with hydrocephalus started when she was diagnosed at 4 months old. To date, she has had 11 hydrocephalus-related neurological surgeries throughout her life, seven of which have occurred in the past two years at Memorial Hermann-Texas Medical Center.

Anyone can be diagnosed with hydrocephalus at any age. The increased intracranial pressure from buildup of CSF can lead to headaches, nausea and vomiting. More severe symptoms may include double vision or loss of eye control, which can cause a downward glaze, lethargy, coma and even death if left untreated.

Volunteer service and community outreach

In December 2014 and 2015, Wright accompanied a volunteer pediatric surgery team to Haiti on a mission trip led by David I. Sandberg, M.D., professor and director in Division of Pediatric Neurosurgery, Vivian L. Smith Department of Neurosurgery, McGovern Medical School at UTHealth. The UTHealth and Children’s Memorial Hermann Hospital team is made up of neurosurgeons, pediatric anesthesiologists, neurosurgery residents and operating room staff. Most of the surgeries they perform there are for the treatment of hydrocephalus.

“It is an incredible experience to get to go to Haiti and help children with the same condition I have, working alongside the neurosurgeon who has done so much to help me. This is life-changing work and it is great to get to be a part of it,” Wright said.

Another inspiration for her is one of her mentors, Pedro Mancias, M.D., who holds the Adriana Blood Professorship in Neurology at McGovern Medical School. His first-year medical students have the opportunity to learn about Wright’s experiences during his lecture on hydrocephalus. Part of her story includes the medical uncertainties her case presents as well as the chronic pain she experiences.

“Dr. Mancias is so passionate about pediatric neurology. It’s great to be at an institution that listens to the patient’s perspective and incorporates that into teaching,” Wright said.

Since becoming a student at the graduate school, Wright started the Houston Hydrocephalus Community Network in 2013 to educate and support others with hydrocephalus. Children’s Memorial Hermann Hospital and Memorial Hermann Mischer Neuroscience Institute provide Wright with space and other resources for the network’s meetings.

“One of the things I love about leading the community network group is having the opportunity to talk to parents of children who are newly diagnosed, and give them hope,” Wright said.

She is also involved in a volunteer-led fundraising walk supporting the Hydrocephalus Association. The Hydrocephalus Association is the largest nonprofit organization dedicated to hydrocephalus. It funds research into better treatments and prevention in addition to providing educational resources and support for individuals living with hydrocephalus. The organization also advocates for awareness and increased research funding.

“As I’ve opened up about my story, I’ve realized I also open a door of communication. You never know what somebody’s dealing with,” Wright said.

Once she’s completed her M.D./Ph.D., she believes she’ll work toward becoming a pediatric neurologist and seek a fellowship in neonatal neurology. She is interested in working with infants and children affected by posthemorrhagic hydrocephalus and congenital hydrocephalus.

For more information about Wright and her involvement with hydrocephalus awareness, email houstoncommunity@hydroassoc.org.

Wright’s neurosurgeon:
David I. Sandberg, M.D.
Professor and Director
Division of Pediatric Neurosurgery
Vivian L. Smith Department of Neurosurgery
McGovern Medical School

Director of Pediatric Neurosurgery
Mischer Neuroscience Institute
Children’s Memorial Hermann Hospital

Associate Professor
Department of Neurosurgery
The University of Texas MD Anderson Cancer Center

Wright’s mentor:
Pedro Mancias, M.D.
Assistant Dean
Diversity and Inclusion
McGovern Medical School

Distinguished Teaching Professor
Adriana Blood Professor of Pediatrics
Department of Pediatrics
McGovern Medical School

Pediatric Neurologist
Mischer Neuroscience Institute
Children’s Memorial Hermann Hospital

Since publication of this article, Jamie has had an additional shunt revision bringing her to 12 hydrocephalus-related neurological surgeries, 8 of which have been in the last 2 years during graduate school.

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