When Carol Jackson took her then 9-month-old daughter, Delaney, to the pediatrician for a regular check-up, she had the suspicion that something might be wrong.

“Before that I kind of knew she wasn’t hitting the milestones,” Carol recently recalled while holding the now nearly 3-year-old Delaney on her lap.

A typical, happy little girl with a bright smile, Delaney wears her blond hair in pigtails and likes to show off her purple tennis shoes. But at 9 months old, the Macomb girl wasn’t developing the motor skills of other children her age and her legs were often shaky.

Delaney’s pediatrician at McDonough District Hospital ordered an MRI brain scan, which showed excessive fluid in the little girl’s brain.

Hydrocephalus, a condition in which excessive fluid builds up in the brain and causes pressure, had been causing Delaney’s delayed motor skill development and shaky legs.

She underwent emergency surgery at St. John’s Hospital in Springfield to drain the fluid and relieve the pressure on her brain. Doctors implanted a plastic shunt in Delaney’s brain to direct away the excess fluid away.

In February 2012, Delaney underwent revision surgery to replace the shunt. In October, Delaney also got an infection from her shunt and spent a month at St. Francis Hospital in Peoria.

“It was all so fast,” Carol says about the time period from the first visit to the pediatrician to the first surgery. “We knew something wasn’t clicking. It was just a whirlwind.”

The facts

According to the Pediatric Hydrocephalus Foundation, the condition affects more than one million Americans — from newborns to senior citizens — and an average of 40,000 shunt surgeries are performed in the U.S. each year.

Little is known about what causes the condition, and there has been almost no advancement in the treatment of Hydrocephalus.

While surgery to implant a shunt is the most effective treatment for Hydrocephalus, the shunts often fail or cause infections, just as it happened with Delaney.

“Hydrocephalus is like the most common brain surgery in children,” Carol said, “but a lot of time within the first year half the shunts fail, and that’s why I think they need to do more research.”

The shunts include a valve that is implanted behind an ear and a tube that extends through the body to direct fluid away from the brain.

Dr. Mary Kathleen Lockard is Delaney’s pediatrician at McDonough District Hospital and has treated others with the condition. She said there are signs and symptoms parents can look for in pediatric Hydrocephalus.
“If there is an enlarged head, or the head is growing more rapidly, that is something to look for,” she said. “We look for developmental delays as well, such as not crawling or sitting up. Those are the big things we look for. Also a loss of motor skill or headaches, but the head size and rate of development would be the biggest things.”

Lockard said it can difficult to determine what causes Hydrocephalus.

“It can be related to something that happened during prenatal development or something after birth,” she said. “In her (Delaney’s) case, we don’t know if it was something that was already there.”

The cause

Today, physical and speech therapy are helping Delaney maintain her motor skills.

But Hydrocephalus is a condition she will live with the rest of her life.

For support and to learn more about the condition, Carol reached out to the Pediatric Hydrocephalus Foundation and became that organization’s Illinois event coordinator. The nonprofit, 501(c) foundation is run by volunteers.

“I wanted do something,” Carol said. “I wanted something positive to come out of all this. I wanted people to be aware of what Hydrocephalus is, because we didn’t really know what it was.”

Carol, who works as a reading specialist with Macomb CUSD #185, hopes to continue raising awareness about Hydrocephalus. She is organizing a 5K fun run and walk for the Pediatric Hydrocephalus Foundation. The event will kick off at 9 a.m. on Saturday, Sept. 14, at the Old Dairy restaurant. All proceeds will go to the foundation. To register for the event, visit www.active.com/donate/phfrunil2013 or email Carol at carol@hydrocephaluskids.org.