By Ray Stern
By Ray Stern
By New Times
By Amy Silverman
By Stephen Lemons
By Stephen Lemons
By Monica Alonzo
By Chris Parker
At the time, in 1997, the message was still new, but it was everywhere. After decades of watching helplessly as thousands of healthy babies succumbed to SIDS, the United States government was eager to tout back-sleeping as an easy prevention technique that actually worked. The National Institutes of Health launched a public health campaign to get out the word in 1994; within three years, federal funding had grown to $1.1 million a year.
And so every night, every nap, Marin made sure that her baby boy slept on his back. Even when he wasn't sleeping, even when she was there to play with him, he was on his back.
"I was afraid," she says. "You don't want your baby to die of SIDS."
By the time the boy, whom she named Marin Acevedo, was six months old, the right side of the back of his skull had gone flat. Meanwhile, the left side bulged out a bit, making his left ear noticeably higher than the right.
The boy's mother wasn't the only one worried about it. "Everyone in my family said, 'His head is flat in the back!'" she says, sighing. "Family, they'll tell you straight out."
Marin had read about treatments for misshapen heads. She knew soft-shell helmets, for example, could round out flattened areas. But when she took the information to her pediatrician, he assured her that the baby's head would even out on its own.
Now Acevedo is 7. His head is still flat on the right side, and his left ear is still higher. He wears his hair long, but his mother worries what will happen when he decides he wants it shorter.
She sent a desperate e-mail from her home in Brooklyn, New York, to the nation's leading helmet provider, in Tempe. Timothy Littlefield, vice president of Cranial Technologies, wrote back to tell her it was too late: Helmeting only works while a baby's head is still in its greatest growth stage, before the child turns 16 months old.
"I get angry about it," Marin says. "Not that he's so terribly deformed, but that it's something that could have been prevented."
After all, by the time Acevedo was born, physicians had reported in medical journals that skull deformities like his were reaching "epidemic" proportions.
The same doctors observed that the back-sleeping position -- urged to protect babies from Sudden Infant Death Syndrome -- was causing the problem. They'd written studies about the benefit of helmets and the importance of rotating the position of babies' heads to prevent the problem in the first place.
But most pediatricians take their cues from the American Academy of Pediatrics. And the Academy failed to acknowledge the problem for years, much less tell parents about treatment. The federally funded National Institute for Child Health and Development, too, spent millions urging parents to sleep their babies on their backs, all the while insisting that the deformities just go away on their own.
As kids like Marin Acevedo make clear, that simply isn't true.
These kids are now going to school, and some are finding that they can't play football because the team's helmets don't fit. Or they can't find a bike helmet that's big enough. Some parents look into surgery. One New Jersey couple sued their pediatrician for failing to suggest treatment for their son when he was an infant; the jury looked at the boy for 15 minutes and ordered a $2 million verdict.
Parents concede that the problems are mostly cosmetic. But in this appearance-obsessed society, it's hard to pretend that aesthetics don't matter: Study after study has shown that attractive people have an advantage in life. As Barbara Marin admits, she's angry at herself because she could have knocked down one hurdle facing her son -- but didn't.
And now, for the first time, studies are suggesting that the problems may be more than a question of beauty: Even if their deformities are treated, new research indicates that babies with misshapen heads are more likely to have developmental delays and need extra help as they get older.
Still, prominent members of the Academy insist that there's no cause for concern. Leaders at the National Institute for Child Health and Development say the same thing.
They seem petrified that, by acknowledging the deformities, parents will freak out and put the kids right back on their stomachs.
But in the end, their refusal to address the problem may be achieving the very result they'd hoped to avoid.
"Most young mothers, when they have a baby who looks like a freak, they'll have their second baby and think, 'What do I do?'" says Mutaz B. Habal, a Tampa plastic surgeon and editor of the Journal of Craniofacial Surgery.
"So they take the advice of their mothers. They put the baby on its stomach. They tell the doctors they're sleeping it on its back, but they're not doing that. They saw what happened the first time!"
That's just what Marin did. When she had a second baby, another little boy, she let him sleep on his tummy.
"After that," she says, "I thought, to hell with what they're saying."
Before 1992, normal, healthy babies just didn't get misshapen heads.
There were exceptions, but they were rare: A tiny number of babies are born with a defect that causes a misshapen head, accompanied by brain problems so severe they require surgery. And sometimes, pediatric neurosurgeons like Kim Manwaring, who works at Phoenix Children's Hospital, would treat babies who'd been adopted out of orphanages in Russia or China. After weeks of lying flat on their backs, neglected in their cribs as they waited for adoptive parents, the babies' heads were often flat and asymmetrical.
They, too, were sometimes treated with surgery.
But oddly shaped heads were the anomaly. "It wasn't typical to find them in a highly motivated home environment," Manwaring says.
That all changed in 1992, thanks to the public health campaign that, at first glance, seemed to bear absolutely no connection to head shape: the effort to wipe out Sudden Infant Death Syndrome.
For nearly a century, SIDS had been a horrifying mystery. Every year, thousands of American babies were put down to sleep, healthy and happy. And then they'd simply never wake up.
There was never a cry for help. Never a cough. Worst of all for the grieving families, there was never an explanation.
In 1969, the medical community agreed on a name for it: Sudden Infant Death Syndrome, or SIDS. But the official-sounding title was only an attempt to categorize the inexplicable. Scientists still had no idea what caused the deaths. They didn't even know if there was a single cause, or a group.
There were plenty of theories. Doctors in the 1930s thought the affected babies might have enlarged immune system glands. Later speculation centered on a milk allergy. In the 1970s, a researcher who was a particular favorite of the National Institutes of Health managed to convince thousands of mothers that they could save their babies only by hooking them up to pricey "apnea monitors" that beeped whenever the wearer took an especially long pause between breaths. The theory helped sell lots of monitors. It did not cause the SIDS rate to decline.
In the 1980s, the United States government poured $221 million into SIDS research, according to the National Institute for Child Health and Development. Still, SIDS deaths held firm at approximately 5,500 annually.
In 1992, though, the American Academy of Pediatrics came up with a simple directive: Put your babies to sleep on their backs.
Research from Great Britain, New Zealand and Australia had shown a link between babies who slept on their stomachs and babies who died of SIDS. When those governments told parents to sleep their babies on their backs instead, each nation's SIDS rate plummeted.
The Americans decided to follow suit. "We were nervous, because it was so different from what we did in the past," says John Kattwinkel, chairman of the Academy's SIDS task force. "Telling people to put their babies on their backs was pretty radical. But we were convinced it was the right thing to do."
The gutsy decision paid off when the American SIDS rate dropped dramatically. Seventy percent of American babies used to sleep on their stomachs; that number dropped to less than 30 percent, and the SIDS rate declined right along with it.
After 1994, when the National Institute for Child Health and Development rolled out a public health campaign to spread the word further, the deaths decreased even more. Between 1991 and 1996, the SIDS rate plummeted 43 percent, the biggest decline since the Centers for Disease Control started keeping SIDS records.
It was a wonderful thing -- so wonderful that no one seemed to notice that another problem had developed as a result.
The incidence of skull deformity had previously been estimated at one in every 300 babies. But after back-sleeping became common, doctors believe it climbed to more than one in 60. "We saw a huge acceleration in referrals," says Manwaring, the neurosurgeon. "It was like a flood."
For many doctors, who were used to seeing only congenital deformities and extreme cases, that meant surgery. The back of the head was cut open, a bone was taken out, and the head was reshaped. It was harrowing for the babies -- and their parents.
"It worked pretty well," Manwaring says. "But it was definitely major surgery."
A normal infant sleeps for 16 hours, every day, and American babies tend to spend far more time on their backs. They might be shuffled from a car seat to a stroller to a swing, then back to the car seat again, all before being put down for a nap. In every instance, their heads rest flat against something solid. The American Academy of Pediatrics also cautioned against pillows and too-soft mattresses.
For the hypervigilant, the Back to Sleep campaign seemed to ask for nothing less than all back, all the time. One Maryland study, a few years after Back to Sleep, found that 28 percent of parents reported never putting their babies on their stomachs, even when they were awake.
The study, published in Pediatrics in 1998, gave a reason: "They were fearful of the possibility of SIDS."
The combination of beds and car seats acted almost like the cradleboards that Native Americans in the Northwest had once used to deform their babies' heads intentionally: one flat surface after another, for hours on end.
After 16 months, many back-sleeping babies' heads were already wider than their parents', and flat as a board. "On some of these heads, we joke that you can drop a plumb line down the back," one researcher admits.
That was creepy enough. But what really troubled parents were cases where the heads were misshapen, a condition known medically as plagiocephaly.
It started harmlessly enough. The baby would favor one position for sleeping, and that side of the skull would start to flatten. But then, every time the baby was on his back, his head would roll right back onto the flat plane. Meanwhile, the other side bulged out.
Many parents in those early days of back-sleeping felt they had no choice but to take action -- including surgery. But when it came to effective alternatives, Phoenix was ahead of the curve.
In the late 1980s, a few years before the Back to Sleep campaign, Kim Manwaring, the Phoenix Children's Hospital neurosurgeon, had heard that doctors in Seattle were treating some skull deformities without surgery, by using a soft helmet.
Manwaring and his partner, surgeon Stephen Beals, began kicking around ideas. "We started talking," he says. "Could we improve on this, and treat these cases non-surgically?"
With that idea, they got in touch with Jeanne Hertz. A Milwaukee native, Hertz had moved to the Southwest and opened a small orthotics company in Phoenix.
She understood what the surgeons wanted. In 1988, after two full years of experimenting, she settled on her design for the Dynamic Orthotic Cranioplasty Band, or DOC Band.
In simple white foam, with a semi-rigid shell, it resembles a bike helmet with the top cut off. Custom-made for each baby's head, it's light enough to be worn 23 hours a day, for several months on end, but still designed to make a powerful impact.
Manwaring and Beals began to use the DOC Band for babies with plagiocephaly. "It became a big commitment on the part of our clinic," Manwaring says.
That big commitment still meant pretty small numbers. In her first year after completing the design, Hertz sold just six DOC Bands. "This was certainly never going to be a way that you'd make money," she says dryly.
The American Academy's 1992 decree that babies should sleep on their backs changed everything.
"We'd put all the time and effort and research into this," Hertz says. "So when parents came clamoring to their doctors, saying, 'Our babies' heads are deformed,' the surgeons knew to refer them to us. When they saw we were doing good work, they'd send us more."
Because Caedin Craft is 10 months old, he cannot understand why he is in a medical office, stripped to his diaper while a strange lady applies plaster-drenched cloth strips to his skull. At first, he watches her warily, trying to decide whether all this is okay, and then he makes up his mind.
It isn't. He starts to cry.
Caedin's mother, Anna Craft, is dressed for the mess in blue jeans, tennies, and a white tee shirt. She drove him this morning from their home in Avondale to this office on the Phoenix Children's Hospital campus knowing exactly what was coming, but she still looks nervous.
She holds his legs down firmly as the technician works to mummy-wrap the top of his head, supplying a continuous soothing patter. "What a big boy," Anna murmurs. "It's okay. . . . You're a brave little boy, yes you are, yes you are."
The plaster now forms a mask over Caedin's eyes. Below, his tiny nose is turning bright red at the tip. He howls, an angry baby cry that's all noise, no tears. Anna's eyes well up.
"He's doing just fine," the technician, Harlie Kanner, tells Anna quietly, never pausing from applying the cloth, never taking her eyes off Caedin.
"Mom's got tears and you don't," Anna tells Caedin, smiling ruefully as one drops onto her cheek. "Who's the one being the big old baby? It's not Caedin!"
"One more piece," Kanner murmurs, affixing it to the back of Caedin's neck.
He's wailing now, and Kanner doesn't waste a second. She shapes the plaster into a ridge along the crown, scratches some quick lines with a pencil, and expertly cuts the newly formed plaster cast in two. It slides off Caedin's head; he stops crying immediately.
For most American babies with skull deformities, this is now the worst they have to endure: a 15-minute session to make a cast of their head.
From here, workers in Tempe will make two models of Caedin's skull: one as it is, one as it should be. Then they'll make him a DOC Band, fashioned just-so to fit each of his bumps and flat spots. Every few weeks, his mom will bring him back to the office so they can adjust his band, opening up space so his head can grow.
Three months later, if everything goes well (and in 87 percent of cases, it does), the band comes off for good.
This is Jeanne Hertz's patented process. In 1993, Hertz incorporated a new company in central Phoenix, Cranial Technologies. That same year, she was able to open a second office in Dallas. She announced to her clients in 1994 that she would no longer take orders for the spinal products that used to be her specialty.
Hertz eventually opened clinics in 11 U.S. cities and licensed the DOC Band to therapy centers in four others. Cranial Technologies has also taken its product to clinics in Canada, Spain and Great Britain. When it outgrew its 5,000-square-foot headquarters in Phoenix, it opened a new headquarters in a Tempe office park -- this one three times bigger.
Today the company has 110 employees. It sold almost 6,000 helmets last year, at $3,000 a pop.
Petite, with a Midwesterner's openness and brisk energy, Hertz takes a hands-on approach to the company's work. Literally. She's the CEO, but you can still spot her most days in the manufacturing area, in her lab coat and sneakers, putting the final touches on a DOC Band.
"Every one of these cases is absolutely particular to that infant," Hertz says, carefully touching up the crown. "We are absolutely entrenched with these families."
A number of other companies have gotten on the bandwagon. Hertz's company, Cranial Technologies, was the first helmet provider licensed by the Food & Drug Administration, in 1998. Twenty-seven others have gotten approval since, according to FDA records.
Orthomerica Products, whose STAR Band is based on the original design from Seattle, got FDA clearance in 2000. Company representatives say they now sell close to the same number as Cranial Technologies, though they refuse to discuss specific sales numbers or prices.
"It's such an enjoyable business, because kids get better," says Dulcey Lima, the company's clinical education manager. "They wear the helmets three or four months, and they're done. And then the parents are happy."
Soon after Lisa Licano's twins were born, her husband approached their pediatrician with a question about the baby girl: "What's wrong with her head?"
The doctor was unfazed. Gabriella's twin brother had squished her a bit in the womb, he said. So maybe her head seemed a little flat in some areas. Not to worry; it would even out.
It didn't. "I'd ask at every doctor's appointment," says Licano, who lives in Phoenix. "I'd say, 'Will this change?' He'd always say it would." She'd ask if there was anything she could do. Every time, he said no.
Licano was increasingly worried. "Gabby's head wasn't just flat, it was odd-shaped," she says. "There were different flat spots all over."
When the twins were seven months old, Licano reached her breaking point. She sat down at the computer and punched "odd shaped head" into a search engine.
Up popped a list of pages about a medical condition she'd never heard of: plagiocephaly. There was even a Yahoo! message board for parents to talk about the problem.
"It literally led me right to the information," Licano says.
Not that her doctor was listening. At the next visit, Licano pulled out the charts she'd pulled off various Web sites, the printouts that were her effort to explain the unexplainable.
"Sure," he told her. "That's what she has. But when she gets older, if she wears her hair long, you won't even notice."
In the early days of the Back to Sleep campaign, even as some doctors were treating the misshapen heads surgically, others continued to claim that even buying a helmet was a radical overreaction.
Sometimes, when Hertz would present about the DOC Band at medical conferences, the older doctors in the room were openly dismissive. They'd been seeing flattened heads for years, they jeered. The heads would correct themselves once the babies started rolling around and sitting up.
After the talks, the younger physicians would invariably approach Hertz, quietly. They were looking for something just like the DOC Band, they'd say. Could she help?
In 1996, physicians published three landmark studies: two in the Journal of Craniofacial Surgery and one in Pediatrics. All three noted the dramatic increase in plagiocephaly. All three talked about how the right helmet could prevent surgery.
All three connected the increase to the American Academy's back-sleeping recommendation.
To this day, the three studies are the most frequently cited papers about plagiocephaly. But they were virtually ignored at the time.
The National Institutes of Child Health and Development, which was spending nearly $1.2 million annually to promote Back to Sleep, issued a press release crowing about how colds decreased as a result of the campaign. It never issued any statement about the increase in skull deformities.
"We spent three years trying to get a paper accepted," Hertz recalls. "We wanted to say, 'Do you know this is happening, and this is how we're treating it?' But the spokespeople for the Back to Sleep campaign kept saying it wasn't true, that there was no connection."
It wasn't until 2000 that the American Academy of Pediatrics issued a statement about back-sleeping that acknowledged skull deformities.
The statement basically said that there could be a link between the back-sleeping and the problem. It didn't even mention helmets.
It took the Academy until 2003 to do that.
That year, for the first time, the Academy released a set of guidelines for the treatment of plagiocephaly. It wasn't exactly an advertisement for helmets: It noted studies that had found good results with helmets, and also one study that claimed just as much improvement with therapy alone.
But the paper did an important thing. Many doctors had believed that the deformities cleared up on their own. The Academy disagreed.
Instead, the paper outlined a series of actions: Parents should try to move the child's head into a new position at night. Neck exercises were a good idea. And if that didn't work, the answer might well be a helmet or, in rare cases, surgery.
The chief writer of the report was John Persing. Chief of Yale University School of Medicine's Plastic and Reconstructive Surgery Department, Persing was initially skeptical of helmets.
He's come around.
"I still would like to see a rigorous scientific study, to be honest with you," he says. "But my general impression is that a number of patients with irregularly shaped skulls seem to have better than expected results when they use the helmets."
Persing now believes the focus should be on prevention.
"This is something that's preventable, purely preventable," he says. "All these head shapes could be easily prevented -- and we could still see the benefits of the Back to Sleep program -- by doing a very simple maneuver."
For most babies, he says, it would only take one thing.
From the very first night home from the hospital, parents would put the baby to sleep on his back. And then they would make a conscious effort to alternate the baby's position: The first night, turn the infant's head to the right, and on the next, to the left.
If it's done from the beginning, Persing says, the baby wouldn't develop a strong preference for either side. And coupled with lots of time on their tummies, he believes it would keep flat spots from forming, much less becoming a favored groove that the baby rests on every night.
"Look," Persing says. "You have to acknowledge that SIDS rates have gone down. But we should also say, reposition the baby's head from day one. The more you put that out to the community, the more helpful it will be.
"If you did that, the DOC Band, in many of these cases, would really be unnecessary."
Despite the simplicity of the prevention message, Jeanne Hertz and the people at Cranial Technologies won't have to find new jobs any time soon. Prevention methods are still largely absent from the National Institute for Child Health and Development's Back to Sleep materials.
Instead, the agency seems stuck in the old days of trying to downplay the deformities. Door hangers that urge "Safe Sleep for Your Baby," handed out in doctors' offices and available on the agency's Web site, don't even suggest that babies' heads should be rotated, much less acknowledge skull deformities. The accompanying brochure notes only that "for the most part, flat spots on the back of the baby's head go away a few months after the baby learns to sit up."
The brochure suggests briefly that babies should spend time on their stomach. It also mentions, in passing, that parents can stop flat spots by changing the direction of the baby's head at bedtime.
But there's no suggestion it should be done from the first day. The information is buried in a separate section about flat spots rather than included in the list of instructions for sleep time.
The agency's longest promotional material, a 12-page brochure, is even more damning. Plagiocephaly, it says flatly, is usually a "benign condition." Flat spots "disappear" when babies sit up. They "seldom" require helmets.
As evidence, it cites a study in Pediatrics. But the brochure gets it wrong.
Any parent who took the trouble to find the study might be amazed: That study, the one that John Persing penned for the American Academy, suggests just the opposite.
Persing does not ever write that the condition is "benign" or that it "disappears."
Persing does not reject the benefits of helmets.
Instead, he details a full list of escalating treatments: alternating positions, limiting time in car seats, exercises, and, eventually, helmets.
Persing first explains the apparent discrepancy between his paper and the agency's brochure by saying that the information is there for the parents who want it. But he admits that the Academy has dropped the ball on prevention.
"It should be part of the teaching every pediatrician gives to family members," he admits. "As much as we talk about SIDS, we should talk about positioning the child and alternating the head."
Some physicians do that, he says. But, "it's not enough."
Marian Willinger, the SIDS special assistant for the National Institute of Child Health and Development, claims that the agency has addressed misshapen heads.
She points to a single paragraph in agency promotional materials that talks about tummy time. "When we say do something to prevent flat spots, it's inferred that these things should be done from the beginning."
A single paragraph?
Then, she adds, "Maybe we need to emphasize it more. It's a possibility."
Laura Reno, the public relations director for the nation's leading SIDS activist group, First Candle, also points to talk of "tummy time" as proof that the problem is being addressed.
Yet "tummy time" isn't even mentioned in First Candle's current promotional material. Reno claims a new brochure is in the works, and the new brochure will mention it.
But it's hard to imagine the new materials will seriously highlight the potential for deformity. Reno is careful to stress that plagiocephaly fixes itself.
"Ninety-nine percent of the babies, just by rolling and crawling, just by doing that, it goes away and they end up normal. We've got research that shows that happens in the huge, huge, vast majority."
When pressed for that research, she sends over a two-page Word document. It contains quotes from two pediatricians, one who says that helmets mainly "make parents feel better."
The second doctor notes that, for parents who've lost a child to SIDS, the flat heads on their younger children can be a badge of pride: "A sign that they were doing everything possible to try to reduce the risk of a SIDS recurrence."
The document doesn't cite a single research paper.
In 1999, a New Jersey couple named Robyn and Guy Iannuzzi sued their pediatricians for not diagnosing their son's plagiocephaly soon enough. The Iannuzzis had questioned their doctors 15 different times about the state of their baby's skull, says their lawyer, Ernie Fronzuto.
They were told it would correct itself.
By the time they finally got the baby into a helmet, it was too late, Fronzuto says.
The boy was 4 years old by the time the case went to trial. He didn't testify, but Fronzuto made sure that jurors got a chance to see him.
"He'd been really made fun of in two occasions during preschool," Fronzuto says. "It was simply a cosmetic case, but the issue I pushed very hard was the psychological effects of cranial deformity on a child.
"We likened it to a cleft palate," he adds. "And that this was something that was curable, but because they let it go, he'll have to deal with it for the rest of his life."
The jury awarded the boy $2 million.
The Newark Star-Ledger wrote one brief story about the case. The family, which Fronzuto says has tried to shield their son's privacy, was never even interviewed. But the story caught parents' attention.
"I started getting calls from around the country," Fronzuto says. He now represents eight families with similar cases, in four different states.
"It was never my intention to take this nationally," he says. "It just happened that way. But I hope it's a wake-up call for these doctors. You can't just take the chance and wait and see. That's like playing Russian roulette."
The doctors who remain skeptical about helmets note that there has yet to be a serious study that takes a group of babies with misshapen heads, and treats half with helmets and half with nothing.
That attitude really annoys Cranial Technologies vice president Timothy Littlefield. "If a doctor sends me a patient, I can't say, 'I'm not going to treat him,'" he says. "The doctors are not going to withhold treatment purely for the sake of gathering data!"
But if the condition doesn't correct itself, detractors ask, wouldn't there be hundreds of kids now in middle school with misshapen heads?
Hertz insists that there are, even if the untrained eye can't always spot them. The answer hardly does Cranial Technologies any favors. After all, if we can't notice the problem, who cares? The idea of a perfect head, notes University of Tennessee anthropologist Richard Jantz, has never been static. "What is a normal-shaped head is highly variable, by culture and over time," he says.
But Littlefield has a whole file of e-mails from parents like Barbara Marin in Brooklyn. They write Cranial Technologies, asking if it's too late for their children: 4, 5, even 10-year-old kids. Even though they're proving Littlefield's point, he still hates writing back to say there's nothing he can do.
Such cases are a relatively small percentage of the total population. Doctors like Manwaring now believe that many heads do get better on their own, or respond well to repositioning if caught soon enough. But not the more extreme cases, and certainly not all of them.
"The older studies imply that this all gets better," Manwaring says. "But we now know that isn't right, that there's a bell curve. The great majority will correct, but that still leaves a tail out there that doesn't.
"And with the high incidence of plagiocephaly, that could be millions, if you're not treating them."
Some of the parents of those children post on the Yahoo! boards, talking to each other about their regrets. Some write about how their kids don't fit into bike helmets. Others worry about whether other kids will notice their children's deformities and tease them.
Some even talk about surgery. "I can't believe we are going through all this when a simple helmet would have corrected it," one mother wrote.
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."