Hot Sulphur Springs 4-year-old suffers from rare disease that makes skull too small for his brain
June 24, 2008
Jake, a rambunctious 4-year-old, plays with a plastic bat and ball off the kitchen patio.
“He’s athletically gifted,” his mom Abbey Wiborg says, peering out the sliding glass door of their Hot Sulphur Springs home.
The bright brown-eyed boy, who prefers to call himself “Spiderman,” likes tee-ball and soccer, loves hockey and riding his bike.
Although they allow him to enjoy his age within boundaries, the thought of Jake causing injury to his head during play is something Jake’s parents shudder to imagine.
Jake was born with a rare form of Craniosynostosis in which multiple fibrous joints between the bones of the skull are fused shut before brain growth is complete.
“His body is trying to make space for his brain,” said his father Doug. Jake’s skull is thinning due to the pressure caused by the brain, making “no room for trauma,” he said.
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In children, cranial sutures are usually pliable and not totally developed, including their cranial fontanel, or soft spot.
Unforgiving cranial sutures that connect the plates of Jake’s skull result in a head abnormally shaped. The young boy’s skull is about the size of his 1-1/2-year-old sister’s. “This is a tight little area,” Abbey explains. “If he cries or bumps his head, he gets headaches.
“Kids notice, and they can be mean. He got mocked the other day,” she said.
Jake has a jagged scar from a surgery he underwent as a baby.
At first, Abbey and Doug thought their newborn was colicky, but his crying advanced beyond normal to screaming and kicking aggressively.
At eight weeks, Jake’s pediatrician in Golden diagnosed his cranial condition.
Immediately from there, the infant was taken to The Children’s Hospital in Denver, where neurosurgeons would soon perform a procedure to ease pressure causing debilitating headaches.
Now at four years, Jake must undergo another surgery. The family leaves for Denver this week.
“He gets bad headaches every day,” Abbey said. “He doesn’t tell me all the time, but then he will ask for his medicine.”
Since multiple sutures have closed, six metal spacers will be inserted into the young boy’s head and will remain for four months. After that, he likely will undergo another surgery.
The couple is doing the best they can to prepare their young son. “We talk about it, but I don’t think he grasps it,” Doug said.
“He’s afraid, he’s scared, but he wants his headaches to go away,” Abbey said.
Only about 10 percent of children diagnosed with Craniosynostosis need a second surgery, according to the National Craniofacial Association, http://www.faces-cranio.org.
“There are different degrees of Craniosynostosis, but an estimation is that it occurs in about one in 1,000 births, so it is common,” said Stephanie Hale, program director of the association. “It is also most commonly misdiagnosed,” she said, “or goes undiagnosed of all Craniofacial conditions.”
Without early detection by way of a CT Scan followed by surgery, brain damage is a possibility, she said.
After the first surgery, Jake was unable to see for many days due to swelling.
The Wiborgs worry about the same happening again to their now much older son.
A specialty surgery so close to the brain is “scary as a parent,” Abbey said.
“It’s a major surgery,” she continued. “If we’re really, really lucky, these will be his last surgeries. We’re keeping our fingers crossed.”
Jake’s case, because of its severity, has attracted renowned neurosurgeons.
Although the Wiborgs have insurance, the young couple may soon face $30,000 to $40,000 in medical bills. They still owe $12,000 from Jake’s first surgery.
“You just don’t save money for things like this,” said Abbey, a massage therapist. Doug works full-time in construction.
“A lot of people don’t know we have this going on,” she continued, tears forming in her eyes.
“It’s tough as a family, it’s stressful, and it’s hard to admit that we have something like this happening … it’s hard to ask for help.”
” Tonya Bina can be reached at 887-3334 ext. 19603 or e-mail firstname.lastname@example.org.