Jayne Crouthamel, 16, has undergone 13 brain surgeries to treat her congenital hydrocephalus, a neurological condition she was diagnosed with at birth.
Raised in Burr Ridge, Illinois, Jayne’s condition causes cerebrospinal fluid (CSF) to accumulate within her brain. For most individuals, we produce approximately 1/3L of CSF, or brain water, per day and continually reabsorb it back into our blood stream within our head, but Jayne struggles to manage her spinal fluid independently.
“There are many reasons why hydrocephalus occurs in infants or adults,” says Dr. Bowman, MD, Director, Multidisciplinary Spina Bifida Center; Co-Director, Fetal Neurosurgery, The Chicago Institute for Fetal Health. “Our brain makes CSF all day long. For many different reasons, some children or adults may have difficulty managing their cerebral spinal fluid without assistance.”
Three of Jayne’s brain surgeries have occurred this year alone but despite this uphill battle, Jayne, who was also diagnosed with cerebral palsy and is visually impaired, is a sophomore at the University of Chicago Laboratory schools, participates in performing arts and even writes her own plays. She has swum competitively, earning a strong enough time to place into the Illinois state competition for physical and visual impairment.
While there is no cure for hydrocephalus, Dr. Bowman, who cares for Jayne, says Lurie Children’s treats patients with this condition by inserting a VP shunt, a small tube that drains CSF from her brain to her abdominal cavity, where blood vessels around the bowel reabsorb the fluid.
A VP shunt requires life-long maintenance. A shunt can get infected and malfunction at any time; it is completely random if or when patients like Jayne need surgery. Some patients with hydrocephalus do not require any shunt revisions, but others require innumerable revisions.
“Each time Jayne goes in for a shunt revision, we always have fears and worries but know that she is in good hands,” says Pam Crouthamel, Jayne’s mom. “Whenever she needs a revision, her life is disrupted — she misses school, steps back from activities and has to overcome new hurdles. But most importantly, she has proven to show her strength and exceed all expectations.”
Despite enduring multiple setbacks, including flurries of shunt revisions and constant worry, Jayne continues to excel academically and personally. She aspires to start swimming again after her last shunt surgery.
“Maybe hydrocephalus isn’t the most noticeable condition, but it does affect people,” says Jayne. “It’s hard for others to understand what people with my condition are going through, so I hope to build a greater hydrocephalus community to further communication and support.”