Hydrocephalus: A personal matter becomes a professional motivation | Children's Memorial Hermann
Since Jamie Wright was a child, she has wanted to change the outlook for people who struggle with a diagnosis of hydrocephalus, which is the most common reason some children require brain surgery.
Out of every 1,000 babies born in the U.S., about one to two are born with hydrocephalus, a condition in which a clear fluid that normally surrounds the brain and spinal cord accumulates on the brain.
Wright was one of them. Born premature with fluid on the brain, Wright had her first brain surgery at 4 months old. Despite the numerous surgeries that followed and crushing headaches from her condition, Wright hit her developmental milestones and excelled academically.
Others aren’t as fortunate.
While prognoses vary, children with hydrocephalus can face lifelong impairments to their cognitive and physical development. Some kids born with hydrocephalus can’t walk, talk or function independently on their own. Other children benefit from early diagnosis, surgery and rehabilitation, and face relatively few limitations. Untreated, hydrocephalus can be fatal.
Now working toward a postdoctorate and medical degree at McGovern Medical School at UTHealth with a focus on neurology, and alongside experts at Memorial Hermann Mischer Neuroscience Institute at the Texas Medical Center, Wright is in a unique position to turn the tables on the condition that impacted her and currently affects more than one million people in the United States.
“I want to give people hope, to broaden people’s perspective of what can be possible for patients diagnosed with hydrocephalus,” Wright said.
Every waking minute, Wright is dedicated to raising awareness about this condition. She recently celebrated her 29th birthday by hosting a fundraiser for hydrocephalus research.
In addition to her busy academic schedule, Wright has also teamed up with the man who has performed some of her more recent brain surgeries – Director of Pediatric Neurosurgery at Children’s Memorial Hermann Hospital David Sandberg, M.D., FACS, FAAP.
Wright has joined Dr. Sandberg on his mission trips to Haiti, where she helped other kids diagnosed with hydrocephalus. She has accompanied him, as he performed the same shunt procedure she once had done on her, putting her in the remarkably unusual position of seeing the surgery from the eyes of patient and provider.
On top of all that, Wright also founded and runs the Children’s Memorial Hermann Hospital’s first hydrocephalus support group, which has been a lifeline for families.
Wright’s dream to one day become a neurologist in order to help other families who find themselves in her position — facing a vast unknown and struggling to cope with a life’s worth of medical interventions — is closer to being realized with each passing day.
Advanced Care for Those With Hydrocephalus
The incidence and consequences of hydrocephalus are painfully evident. However, the causes of hydrocephalus are not clearly definitive. It is believed that genetic defects, developmental disorders, or complications from premature birth are likely causes of the condition.
Thankfully, the prognosis for patients can be very good with early diagnosis and treatment.
The multidisciplinary team at the Mischer Neuroscience Institute has developed a comprehensive, coordinated program for the care of hydrocephalus patients. From specially trained neurosurgeons and neurologists to experienced and compassionate nursing staff, its team is dedicated to providing exceptional care.
Symptoms of hydrocephalus vary, depending on age and the progression of the condition.
Prenatal hydrocephalus is most often diagnosed between 20 and 24 weeks of gestation, when an ultrasound shows the abnormal dilation of the fetus’s ventricles and cerebrospinal fluid (CSF) pooling. Infants and babies who are younger than one year may appear to have an abnormally shaped head that is unusually large. Other symptoms may include bulging at the “soft spots,” exaggerated swollen veins on the head, vomiting, sleepiness, irritability, a downward cast of the eyes, and seizures.
The specialized care team at Mischer Neuroscience Institute uses a number of tools to detect or confirm the diagnosis of hydrocephalus, depending on the child’s age and symptoms. Additional tests may be necessary to confirm the diagnosis and degree of hydrocephalus, including ultrasound, CT scan, MRI and a shunt series of X-rays.
Surgically implanting a shunt is the most common treatment for hydrocephalus. A shunt is a device that contains a flexible tube and valve system that drains CSF from the brain into another part of the body such as the abdomen or chest cavity where it can be absorbed into the bloodstream.