Jane's Hydrocephalus Brain Surgery

Jane’s seizure and hydrocephalus medications are not reliably controlling the pressure building around her brain.

Despite multiple medication adjustments and intensive specialty care, Jane continues to experience breakthrough seizures caused by her extremely rare form of hydrocephalus known as external hydrocephalus. Unlike “typical” hydrocephalus, where cerebrospinal fluid (CSF) enlarges the ventricles inside the brain, Jane’s fluid is accumulating externally in the subarachnoid space surrounding the brain itself.

This distinction matters tremendously — because it means Jane is not considered a good candidate for a traditional VP shunt.

A VP shunt works by draining enlarged ventricles inside the brain into the abdomen through implanted tubing and valves. But Jane’s fluid is not primarily trapped inside the ventricles. Instead, it is becoming trapped around the outside of her brain in abnormal fluid pockets and spaces. Implanting a shunt would not reliably address the underlying problem, and it would also introduce permanent hardware that can clog, malfunction, become infected, or require repeated revision surgeries over time.

Instead, Jane’s neurosurgical team is recommending a far more specialized approach.

Jane will undergo a bilateral burr hole craniostomy procedure. During surgery, small precision openings called burr holes will be created on both sides of her skull, allowing the neurosurgeon to access the abnormal cerebrospinal fluid collections surrounding her brain. The dura mater — the protective outer meningeal membrane covering the brain — will then be carefully opened and “tacked down” using specialized suturing techniques designed to prevent fluid from becoming trapped and reaccumulating under pressure again.

In simpler terms, the surgery aims to permanently restore normal fluid movement around Jane’s brain instead of relying on an implanted drainage device.

This procedure offers something we desperately hoped for: a chance at long-term pressure relief without permanent hardware inside her body. With no shunt tubing or valve system implanted, there is nothing that can later clog, fail, disconnect, or break as Jane grows.

Her neurosurgeon believes this gives Jane the best chance at a more stable future.

This is a highly specialized neurosurgical procedure, and the estimated cost of surgery, hospitalization, anesthesia, advanced monitoring, and postoperative care is approximately $10,000.

Jane has already fought so hard to get here. Every day she continues to remind us how much joy, determination, and personality can exist inside such a medically fragile little body. Now we need help giving her access to the surgery that could finally relieve the pressure her medications alone cannot control.

If you would like to help Jane reach surgery, please donate today.

Thank you for being part of her rescue story.