Misshapen Heads: Causes and Cures

Holly-Anne Carll isn’t like most babies. For one thing, at the tender age of 10 months, the triplet, along with brothers Jared and Derek, has already logged three days of paid work on the set of the NBC sitcom “Friends.” And at night, she sleeps in a special helmet to reshape her head because it’s flattened on one side.

Parents know babies are born with soft skulls. But it wasn’t until the last few years, when Americans began positioning sleeping babies on their backs to curb crib death, that doctors began seeing a marked increase in lopsided heads.

Holly-Anne’s correctable squishing of the skull, called plagiocephaly, has been on the rise since 1992, when American doctors launched the “Back to Sleep” campaign against Sudden Infant Death Syndrome. The idea was to keep babies off their stomachs to avoid suffocation, thought to be a cause of crib death.

With the campaign in place, SIDS has declined by 44%, an accomplishment that Dr. John Kattwinkel, chairman of the American Academy of Pediatrics task force on infant sleep position and SIDS, says should not be underestimated.

“The exciting thing is that the SIDS rate has dropped because babies are sleeping on their backs,” Kattwinkel says. Before the campaign, more than 70% of babies slept on their tummies; that’s down to 20% today.

By about 1996, groups of doctors published studies reporting that cases of head-flattening increased from one in 300 infants to one in 60, and thought it wasn’t coincidental that the increase occurred in a period when more babies had been put to sleep on their backs, says Dr. John M. Graham Jr., director of clinical genetics and dysmorphology at Cedars-Sinai Medical Center in Los Angeles. In the majority of cases, the distortion coincides with torticollis, a muscle shortening or tightening on one side of the neck.

The problem is subtle because “babies basically have no neck. You don’t even notice the tilt until the second half of the first year,” Graham warns.

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Newborns who develop the problem tend to favor one side during sleep. The resulting pressure torques the head, producing a balding spot on the scalp, distorting the face and jaw and possibly even thrusting one ear forward.

With alert parents and medical attention, the problem can be resolved simply.

“If we can get these kids assessed and treated at 2 to 4 months of age, we can treat the whole thing with neck physical therapy and repositioning, most of the time in a very noninvasive way,” Graham says. By having babies sleep on their backs with their heads to alternate sides, their heads get a chance to fill out properly. It comes down to “learning to toast them equally on both sides; it’s just like cooking a hamburger,” Graham says.

Kattwinkel, a pediatrics professor at the University of Virginia in Charlottesville, also recommends periodically reorienting the baby’s position in the crib. Babies “tend to turn their heads toward the action, primarily toward the door of the room the mother comes in.”

Kattwinkel maintains that in most cases, the problem resolves itself, especially when the baby begins sitting up at 5 to 6 months. He cites the example of Asian babies, who are traditionally put to bed on their backs and who “have always had a little bit of a flat head for the first six months until they start sitting up.” But he acknowledges that when there is significant torticollis, intervention may be necessary.

Graham doesn’t want to alarm parents but says that without intervention, even moderate cases can “end up with long-term facial asymmetry. I still think there’s no reason a kid has to grow up with a distorted face because the problem wasn’t managed appropriately.” He thinks parents need to be aware very early on of head-tilting and alert their pediatricians right away if they suspect a problem.

Michele Randall Carll of Westchester wasn’t aware of anything amiss until her triplets’ checkup at 4 months.

“When they were born, their heads were round, everything was perfect. At about 4 months, my pediatrician noticed that my daughter’s head was . . . pointier on the left side and flatter on the right.”

The pediatrician referred her to Graham, who informed her that Holly-Anne had plagiocephaly and torticollis, frequently seen when multiples share tight quarters inside the uterus. Singletons may get it when the baby is large or the mother’s pelvis is small.

Carll went home and dutifully began following Graham’s instructions to stretch the baby’s neck six times a day. She also placed wedge-shaped sleep positioners in Holly-Anne’s crib--propped up with 10-pound rice bags--and moved the toys and mobile, all so the baby would sleep on the side she naturally turned away from.

Holly-Anne improved, but not enough before the soft bones of her head were beginning to harden, so Graham recommended an orthotic helmet to let the misshapen side fill out.

Carll and her husband, Paul, learned that health insurance companies don’t like to pay for the helmets, even though doctors say they can avert further facial distortion. The family’s primary and secondary insurance companies both said it wasn’t a medical necessity, but the Carlls began making monthly payments on the $1,500 helmet “because every day counted,” Carll says. The family is still battling its primary insurer and has a grievance hearing set for Oct. 12.

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Laurie Ender has a similar story.

She and her husband, Chris, noticed their son Davis’ head turned to the left when he was in his car seat or swing. The Valencia couple took Davis to Graham, who told them their son had a moderate case of plagiocephaly. But Ender was reassured when Graham, who treats many kinds of genetic deformities more complicated than plagiocephaly, said: “Most of the kids I see I can’t cure; I can just improve their quality of life. I can cure Davis.”

“That’s all I needed to hear,” she says.

Ender and her husband tried repositioning Davis during sleeping hours and exercising his neck while awake. They dipped into savings and got him a $2,000 helmet on St. Patrick’s Day this year, and he wore it 23 1/2 hours a day through July.

“If you look at him now, you would never notice it,” Ender says of her year-old son. “At the beginning, one whole side of his face was lower--the jaw, the eye, it really sort of pulled down everything on that side.”

The Enders, who went through several appeals for reimbursement, finally prevailed with their insurance company. But, Ender says, the bottom line was they had to go forward.

“What happens when he’s 16 and his head is lopsided and he comes to us and says, ‘Why didn’t you fix this when you could?’ ”