Boy's experience inspires a Colorado mom's activism
Saturday, August 13, 2011
GREELEY, Colo. (AP) — Blake Fallis appears to be a normal 3-year-old boy. He's rambunctious. He asks his parents for their cellphone so he can play with the keypad. He likes to ride his tricycle.
But he has a curious-looking lump that curls from the top of his scalp down the side of his mohawk-shorn head and disappears at the base of his skull. The scar-like lump is a shunt and tube running from the crown of his skull to his abdomen, where it allows cerebrospinal fluid to drain and be reabsorbed into the body.
Until two years ago, Ashley and Tom Fallis of Evans didn't worry about Blake's brain. He seemed to be a perfectly normal toddler — albeit one with a large head.
"We just thought he had a big head — that he took after his dad," Ashley says with a chuckle.
But all that changed a couple of days after Thanksgiving 2009 when Blake tugged on a thread of beads that strung together a row of fireplace stockings, and their heavy holders, pulling one of the holders down onto his head.
After taking him to an urgent care clinic in west Greeley and not getting a CAT scan — a physician assistant said a scan was probably unavailable that day — they took him to North Colorado Medical Center the next day. Ashley worked in the intensive care unit at NCMC at the time, and Tom called to tell her the scan found no bleeding but "moderate hydrocephalus." Hydrocephalus is known as water on the brain, but it's actually an inability of cerebrospinal fluid to drain properly.
"I went to the ER and saw his CAT scan and I just broke down and cried," Ashley says. "There was so much water you could barely see his brain."
At Children's Hospital in Denver, a neurosurgeon told them Blake was fine and to bring him back in a year for a checkup. But Ashley was uneasy with the diagnosis and found a physician with the Banner Health system in Phoenix. The family traveled there on New Year's Day 2010 and Blake underwent multiple tests, then went back a couple of months later for a neurological assessment.
"Everything showed he was about a year behind in his neurological development," Ashley says.
Blake had temporary successes with various surgeries — six in all, most occurring in Phoenix and the last couple at Children's Hospital in Denver — but there were often setbacks. One time he fell and hit his head, fracturing his skull. After that the hydrocephalus symptoms of vomiting and inconsolableness came back. Another time a fluid valve put in his skull came out unexpectedly.
Finally, Blake got his first shunt to drain the cerebrospinal fluid to his abdomen in late December 2010. But he was producing so much fluid that it caused a hernia in his right testicle. A new low-pressure shunt was then installed.
After seven surgeries and $30,000 in out-of-pocket expenses — the Fallises estimate the total bills, including insurance payments, surpass $1 million — Blake's hydrocephalus was being controlled.
In early 2011, the eyes of Ashley — who knows what a healthy X-ray image looks like from her medical experience — widened.
"I never have seen so much brain on my son before. His ventricles were back to normal. I cried because of everything he'd gone through. . The 28th of June marked our six-month date of being surgery free. If we can make it to a year we're having a huge party."
Blake is back to talking to his parents and two older sisters, ages 8 and 5. He's undergone a year of physical, occupational and speech therapy, making up the ground he'd lost when the fluid collected in his brain.
One in 500 babies are affected by hydrocephalus, a condition the Fallises have learned a great deal about thanks to the Pediatric Hydrocephalus Foundation, which has chapters in 18 states. Turning to that foundation and the parents dealing with the condition in other states became Ashley's support group.
A national representative asked Ashley if she'd like to start a Colorado chapter and be its director. The two-year ordeal gave her great empathy for what parents go through — "you never expect it to be your child" — and a desire to help them. She plans to start a hydrocephalus support group at Children's Hospital, and she'll testify to Congress in September about her family's experience with the illness. This September marks the second annual National Hydrocephalus Awareness Month.
"That (foundation) was my support in the hospital, and I think it's just very important for local parents to know that they're not alone and there is a place they can turn to," Ashley says.
For fathers dealing with the illness, Tom says, "I'd be more than happy to talk to them." He notes that for a while during the ordeal he was in denial as to the severity of Blake's condition.
"I'm so blessed to have Ashley. I did try to play the blind card and she stepped up and said this is what needs to be done before it gets worse," he says. "She was able to see through the smoke and mirrors."
Ashley says the national chapter of the Pediatric Hydrocephalus Foundation raised $45,000 for research last year. The causes of hydrocephalus are still not known.
"It can take a life if it's not treated properly," Ashley says. "That's why when we went to Children's in the first place I said, 'You're crazy. We're going to get a second opinion.' I think that's important for parents to know you can get a second opinion. Because if we didn't I don't know we'd have a son today."
The last two years put a strain on the family — financial, communication in the marriage, lack of time for Fallises' other children while so much attention was paid to Blake. But they've come through it stronger and now want to help others.
It's given Ashley, who now works as a respiratory therapist at Northern Colorado Rehabilitation Hospital, a new perspective on health care. "All this stuff has shown me what the patient and the family needs. . Being in health care should be about building relationships with the patients and families."
Blake will have the condition the rest of his life, needing a shunt to help with proper drainage. But he should be able to lead a normal life and even play sports.
The family has nicknamed him "Hydro." Sometimes they say, "Hydro, our million-dollar baby."
"That's why I'm glad it's him rather than someone else, because we can afford to take care of it and pay for what he needs to have done," Ashley says.
Information from: Greeley Daily Tribune, http://greeleytribune.com