Hydrocephalus, a brain condition that affects one out of every 500 births and one out of every 1,000 infants born in the United States, is not widely known.

Hydrocephalus occurs when fluid accumulates in the brain and is commonly referred to as water on the brain. While the term may not be familiar to anyone who doesn’t have any friends or family diagnosed with this condition, it is a common birth defect, with “another 6,000 children annually developing hydrocephalus during the first two years of life,” and in some cases, brought on from brain injury such as car accidents, according to the National Hydrocephalus Foundation.

Hydrocephalus is typically in young children, with more than 50 percent of hydrocephalus cases present at birth, but may develop in adults. The Hydrocephalus Association states that 1 in 100 American seniors develop hydrocephalus. Undiagnosed patients are characterized with sunken eyes, bulging fontanel, and enlarged heads, and their condition can lead to brain damage and intellectual disabilities.

Two treatments are available, and both require brain surgery. The common treatment is to insert a shunt which is a long tube that runs from the brain and into the abdomen, so that the fluid is drained from the brain and absorbed into the abdomen. Another, but uncommon option, is an Endoscopic Third Ventriculostomy where an opening is made in the third ventricle of the brain to allow fluid to drain.

Patients with shunts will have multiple brain surgeries because shunts only work for an average of 10 years.    

Hydrocephalus can impact an entire family and each diagnosis is different.

The patient
Dakota Wald (10) was six and a half months old when she was diagnosed with hydrocephalus. Two weeks after her diagnosis, she underwent brain surgery.

Due to the size and weight of their heads, babies and toddlers with hydrocephalus undergo therapy to strengthen their neck muscles. As a result of their condition, they may also experience a delay in motor skills.

“I was in physical therapy until I was two. I was in physical therapy because hydrocephalus had affected my ability to sit up, crawl, and walk,” Wald said.

Now that she’s older, Wald admits that her condition has made her more cautious.

“When I get into an accident I have a great chance of a traumatic brain injury, [more] than the others who don’t have hydrocephalus,” she said.

Yet, Wald doesn’t let her hydrocephalus hold her back.

“Having hydrocephalus may have some limitations, like for example, not being able to join the military, [but it] doesn’t mean that it’ll stop me from reaching my full potential,” she said.

Due to the fact that people may not be educated on hydrocephalus, Wald encourages people to keep an open mind about her condition.

“Every time I tell people my story they are like, ‘Eww what is that’ or ‘Dude that’s gross,’” she said. “It’s disrespectful.”

The sibling
Brandon Lane’s (12) younger sister Emma was diagnosed with hydrocephalus during his mother’s pregnancy at 20 weeks.

Having a sibling with hydrocephalus, Lane can’t help but worry about her.

“There is always a fear of a shunt malfunction, injury to the head,” he said. “It is the most common reason for brain surgery in children.”

Shunt malfunction occurs when there is blockage in the shunt that causes it to function intermittently or not at all. Since some shunts can be adjusted by a strong magnetic field, sources with magnetic fields should be away from patients with implanted valves.

“I worry about my sister being near any type of magnets,” Lane said. “This ranges from cell phones, ear buds, [and] refrigerators, to other things with magnets in them. Even the weakest of magnets can cause a shunt’s setting to be changed which would create a malfunction in the shunt.”

Lane wants people to know that this condition can be fatal.

“Something I would like others to know about hydrocephalus is that people can die from it,” he said.

The parent
English teacher Mary Ann Kurose has a daughter who was diagnosed with hydrocephalus when she was an infant.

“When Sophia was three months old, she had the head circumference of a three-year old,” she said.

Having a child with hydrocephalus has altered her philosophy as a parent and teacher.

“I try not to let little things bother me anymore. I couldn’t wait for her to take the containers out of the cupboard or to draw on a piece of paper because the occupational therapist made me see that they were all signs of cognitive development,” Kurose said. “At school, I’ve become more compassionate with my students. A sick child affects the entire family. It’s difficult to focus on school when you’re worried about a family member.”

Kurose does admit, though, that her daughter has forced her to pay special attention to signs and considerations that she took for granted with her other daughters.

“Her pediatrician warns us to err on the side of caution whenever she’s sick because we have to determine if the sickness is related to her shunt, which means that she may have to go in for another surgery,” she said. “The doctor also cautions us against taking trips to third world countries because there may not be a medical facility to help her if her shunt malfunctions. Whenever we travel, we always carry Diastat, in case she has a seizure on the plane.”

Kurose said that Sophia is a typical seven-year old and doesn’t have any physical, cognitive, and developmental delays but she worries constantly about her daughter’s future.

“I worry that her seizures will resurface, I worry that she may have an underlying learning disability that we don’t see,” she said. “Despite all this, I just want her to be happy.”