Jade’s recovery story
My daughter, Jade, was born hydrocephalic. She is an accomplished musician and academic with a Ph.D. from the University of Chicago and a coveted tenure-track position at a prominent Midwestern college. In 2014, that all came to a screaming halt when her hydrocephalus symptoms returned. Thankfully, we found Michael Williams, M.D., director of the Adult and Transitional Hydrocephalus and CSF Disorders program at UW Medicine.
He changed my daughter’s life.
Good Years, Bad Years
Jade was born in 1978. She received her first shunt when she was 2 months old and thrived for the next 18 years — until she transferred from pediatric care to adult care.
At age 20, Jade's shunt became blocked. The repair was mismanaged, and she had three consecutive surgeries, during which she experienced extreme intracranial pressure that left her unable to read for several months. The shunt was removed and successfully replaced by an invasive procedure (a ventriculostomy), which allowed her to complete graduate school and start her career. In 2014, Jade’s symptoms returned, and she received a new shunt and an anti-siphon device to regulate the drainage of fluid. The debilitating symptoms continued, however, and she was forced to go on medical leave. Doctors were unsure that her life would ever be the same.
Our gratitude knows no bounds, and our hopes for our child are greater than ever.
New Approach, Bright Future
While pursuing other opinions, we found Dr. Williams. He monitored Jade’s intracranial pressure for 48 hours and concluded that the anti-siphon device was not working, causing Jade to suffer from low pressure — not high pressure, as her other physicians had assumed.
Dr. Williams suggested that the anti-siphon device be moved from Jade’s head to her torso, and in just three weeks, the headaches, nausea, and cognitive and motor dysfunction stopped. She will miraculously return to work this fall after two years of medical leave. The miracle, of course, was finding Dr. Williams.
Hope for the Next Generation
Little is known about developmental changes and medical needs as children with hydrocephalus move into adulthood, and the shift to adult care is often precarious, as it was in Jade's case. But Dr. Williams and his colleagues are working to change that through thoughtful care and research during the transitional period and by using measurement, in addition to clinical observation, to understand what is going on in the brain.
Our gratitude knows no bounds, and our hopes for our child — and for the next generation of hydrocephalic children growing to adulthood — are greater than ever.
He changed my daughter’s life.
The Adult and Transitional Hydrocephalus and CSF Disorders program is supported, in part, by generous donations from the community. I feel privileged to have been able to make such a donation. Please join me in helping Dr. Williams continue to save and change the lives of young and older adults — perhaps your children’s lives or even your own and mine — well into the future.
Make a gift today!