Head Games

Parents are being told to sleep babies on their backs to avoid SIDS. The medical establishment has ignored the unintended consequences -- and that's making one Tempe company very, very successful

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.

Jeanne Hertz’s Tempe company is the nation’s leading helmet provider.
Peter Scanlon
Jeanne Hertz’s Tempe company is the nation’s leading helmet provider.
Phoenix neurosurgeon Kim Manwaring believed in 
helmets long before many of his peers.
Peter Scanlon
Phoenix neurosurgeon Kim Manwaring believed in helmets long before many of his peers.

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.

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