Like most 12-year-olds, Madelyn Edgecomb of Fresno loves to listen to music. Her favorite? Christmas tunes, all year round. She especially likes "O Holy Night" perhaps because she's spent so many nights in the hospital, having repeated surgeries to adjust the shunt in her head. The device controls her hydrocephalus.
Edgecomb was born with the condition that causes too much cerebrospinal fluid to collect in the brain, instead of drain out and recirculate in the body. So far, she has had 29 surgeries, but that hasn't affected her ability to remember details about her life.
"I was born at Children's Hospital Central California and they have a playroom with purple doors," said Edgecomb.
"She's really brave and she has a lot of determination," said Carrie Awbrey, Edgecomb's mother.
Awbrey is the co-director of the California Chapter of the Pediatric Hydrocephalus Foundation. She says the nonprofit offers guidance for families of children with the disorder.
"It's a huge support especially in the hospital in the middle of the night or your child's been taken to the ICU in the middle of the night, you can call someone," said Awbrey.
Neurosurgeon Dr. Meredith Woodward at Children's Hospital gets many calls in the middle of the night for emergency surgeries. She showed Action News an image of a child's brain with hydrocephalus. The dark area showed the excessive fluid.
"It is common, it is common and yet people probably aren't aware of it," said Dr. Woodward.
Implanting a shunt and catheter to divert fluid away from the brain usually happens at birth but the cases vary widely; some children have one shunt for years, others need multiple surgeries for replacements.
Technology is leading to better ways to treat hydrocephalus. One advancement is being used at Children's Hospital. Surgeons can attach a tiny camera into the catheter for ideal placement in the brain, leading to more effective treatment.
"Many people think if you have a birth defect or a neurological problem that your life is going to be bad. And I think if people become aware that it's a disability sometimes, but sometimes it's a very minor disability or not a handicap at all. So if they're diagnosed early then they can be treated," said Dr. Woodward.
Edgecomb wants to one day work at Children's Hospital.
"Because they want to help kids and lots of children," she said.
Meantime, Edgecomb continues to win her own fight against the disorder that won't stop her from dreaming.
September is National Hydrocephalus Awareness Month. To learn more about the Pediatric Hydrocephalus Foundation, visit www.HydrocephalusKids.org.