By Ray Stern
By Ray Stern
By New Times
By Amy Silverman
By Stephen Lemons
By Stephen Lemons
By Monica Alonzo
By Chris Parker
On the phone, that mother explains that she's taken her daughter to numerous plastic surgeons. The girl, now 3, has facial asymmetry: one eye higher than the other, the ears misaligned. She'd be a good candidate for surgery, the doctors say, and she may need more than one operation.
When the girl was a baby, the family had sat down with both Cranial Technologies and its rival, Orthomerica, to discuss helmeting. But in the end, they listened to their pediatrician, who insisted it would just clear up on its own.
"He completely talked us out of it," the mother says.
When Kristen Tolbert's son, Josh, developed a flattened skull, she knew enough to ask about helmets. A stay-at-home mom in Gilbert, Tolbert remembered hearing about skull deformities in nursing classes, before she switched to the microbiology major she would eventually graduate with.
But her knowledge didn't make it easier. When Josh's first doctor insisted the problem would round out on its own, Tolbert got a second, younger doctor. Even then, she ended up in a knock-down, drag-out fight with her insurance company.
Many insurance companies do cover most of the helmet's cost, says Sandy Bruno, the national patient coordinator for Cranial Technologies. But others have gotten more crafty over the years about refusal. Prosecutors in Cook County, Illinois, have charged one insurance company with violating state law by giving conflicting reasons for rejecting helmet claims. In Florida, a bill is waiting for a vote that would require any policy sold in the state to cover helmets.
In Gilbert, Kristen Tolbert was fighting a lonely battle. Her provider first denied the helmet, claiming it was cosmetic. Then, that DOC Bands were still an investigational treatment. In its third denial, the company argued that the helmet was not medically necessary.
Tolbert and her husband had debated whether the helmet was worth paying for. "They told me it would probably clear up. But probably? To me, that's gambling," she says. "I didn't want to look back in two years and say, 'I should have done that.'"
Her insurance company's oiliness steeled her reserve. "It got to the point where it was not about the money. It was just wrong," she says.
In the end, Capitol Blue Cross coughed up the money -- not just the 80 percent that Tolbert argued was covered by her policy, but the entire $3,000.
Parents who've dealt with skull deformities often find it to be a steeling experience. In retrospect, some openly question what their doctors were thinking. They wonder why they got so much information about Back to Sleep and none about the potential consequences.
Like Tolbert, many now spot misshapen heads everywhere. "You think, why is their doctor not saying something to these people?" Tolbert says. "When it's that bad, there's no way it's going to get better on its own."
They've started an online petition, urging the American Academy to take deformed skulls more seriously. They've got 5,350 signatures.
But what may finally force the Academy's hand is not grassroots people power, but rather the catalyst for launching the Back to Sleep campaign in the first place: medical research.
Medical studies are now looking at what happens to babies with skull deformities when they grow up. Their findings are preliminary -- but, in time, could become the catalyst for the medical establishment finally taking flattened heads seriously.
The studies show that kids with plagiocephaly are more likely to have problems later in life: physical, mental and developmental.
A recent study from Harvard showed that flattened skulls can exacerbate neck twisting, which can lead to physical limitations, and -- if untreated, in extreme cases -- can sometimes require surgery.
In Seattle, researchers noted that 40 percent of the kids surveyed who'd been diagnosed with plagiocephaly as babies required extra help once they reached primary school. Some needed special education classes; others, therapy. That was true of only 7 percent of their siblings.
And helmets didn't seem to make a difference, one way or another. Regardless of whether they'd been treated, the kids had problems.
Other researchers followed with similar observations. A 2001 study out of North Carolina found that children who'd suffered from plagiocephaly scored below the mean on a verbal communication test. A study from the same year, in Oklahoma, found delays in cognitive and psychomotor development.
Persing, the Yale plastic surgeon, says it's important that parents not panic. He thinks it's likely that kids with developmental problems are simply more susceptible to skull deformities, because they tend to be more placid kids who spend more time lying quietly in one place.
"There is no proven cause-and-effect relationship between skull deformity and developmental function," he stresses. But he does believe the topic needs more research.
Other doctors take a more alarmist tone. Mutaz B. Habal, the Tampa plastic surgeon and editor of the Journal of Craniofacial Surgery, believes the cosmetic problems being treated today are only the tip of the iceberg.
Eventually, he says, the medical community is going to have to wake up and take the problem seriously.
"We've got developmental delays, cognitive delays," he says. "What we are dealing with here is an international crisis."