Like all fathers, I thought we had the perfect baby. So when our son, Xavier, was a couple of months old, and my wife asked me, "Does his head look flat in the back?" I rejected the idea.
But the question was odd enough that it lingered. Within a week or so, after looking at his head from different angles, I changed my mind: There was a flat surface on his head, on the right rear part of his skull. His forehead also was protruding and his ears were not symmetrical.
Thus began our odyssey into a little-known but surprisingly common condition in infants: plagiocephaly — literally, an oblique or misshapen head. We were relieved that our son's kind would not require surgery. And there was a remedy.
Still, we faced some difficult decisions. The treatment is somewhat controversial, unnecessary in many cases, not always paid for by health insurance, inconvenient for parents and annoying for the infant. A specially fitted helmet — worn 23 1/2 hours a day for as long as six months — is used to shape the baby's growing skull.
The seemingly extreme remedy posed a dilemma: Do we "fix" our son's head by subjecting him to a helmet for six months? Or do we let him grow up with a flattened head?
Because thousands of parents and pediatricians face such questions each year, we decided to share our story.
SIDS and head shape
There are two kinds of plagiocephaly. Luckily, our son did not get the rarer and much more serious form that is caused by craniosynostosis, the premature fusion of the bones in the head. The kind Xavier had — positional, or deformational, plagiocephaly — has skyrocketed to "almost an epidemic" level, as one Harvard medical professor put it. Since 1992, the number of infants with plagiocephaly has increased from one in 400 babies to as many as one in 10, according to numerous medical studies.
What accounts for the spike? The reason is probably the 1992 proclamation by the American Academy of Pediatrics (AAP) that infants be placed on their backs when they sleep to prevent sudden infant death syndrome (SIDS). The "Back to Sleep" program is considered a success; SIDS deaths have plummeted 40 percent in the United States. But it's not without consequences.
An infant's brain grows phenomenally in the first six months after birth; the cranium expands to accommodate it. But since babies spend most of this time sleeping, the head of a baby who sleeps mostly on his back can develop a depression. Picture a balloon filled with water sitting on a table: That's how a child's head can look.
Xavier's large size — he was a half-ounce short of 12 pounds at birth — placed him at greater risk for certain postpartum problems, including plagiocephaly. He ended up with left torticollis, a shortening of the neck muscle on his left side. A tight neck muscle meant he had trouble turning his head. When he slept, his head naturally rotated to the right, pressing the right side of the back of his head flat.
That anomaly would increase proportionally as he grew. Unless we did something about it.
Attempts at physical therapy
Initially we didn't know all this, even after the torticollis and deformational plagiocephaly were diagnosed at one of our first well-baby checkups. Our pediatrician, Anne Kuskowski, prescribed physical therapy. The conventional wisdom is that babies can grow out of the asymmetrical-shaped head. Kuskowski also thought that if you eliminate the torticollis, you could minimize the plagiocephaly.
We began a regimen of activities and precautions. We limited the amount of time Xavier spent on his back and added "tummy time," as pediatricians call supervised play on the baby's stomach. While watching him, we would try to place him sleeping on his side, with a blanket propping him up. (The AAP in July 2003 warned that in the "vast majority of cases," parents should not risk placing their sleeping infants on their stomachs unattended. Avoiding the risk of SIDS outweighs the benign risk of an oddly shaped head.)
For nearly six months, Xavier went to a physical therapist who would stretch his little neck muscles by turning his head to the left and then to the far right until he screeched with pain. My wife, Niki, and I also did exercises with him at home. At night, we tried turning Xavier's head as he slept, but he usually turned it back.
Helmet or not?
At Xavier's six-month checkup, Kuskowski agreed with us that, despite our efforts, the flattened shape had not improved. She agreed we should explore the helmet option.
We were running out of time. Xavier already had passed through some of his first year's largest growth spurts. After a plastic surgeon ruled out a more serious cause for our son's plagiocephaly and a neurologist concurred there was little hope for improvement without the helmet, we knew what we had to do.
The controversy about treatment is related to the fact that medical research offers no clear answers. One study suggests repositioning is just as effective as helmets in mild to moderate cases; another says helmets and such mechanical devices work better. An AAP clinical report in 2003 summarizing the numerous studies on plagiocephaly concluded that helmets are "beneficial primarily when there has been a lack of response" to repositioning and exercises, but that more studies are needed to determine if they are worth the significant costs.
We felt reassured that no one could cite any harm to reshaping a baby's head. In fact, we found out, the practice was not new. In some Asian cultures, mothers fashion homemade cushions out of tightly rolled cloth or towels formed into the shape of large doughnuts to prevent flat heads — something we learned from Xavier's physical therapist, who is from India. Several ancient civilizations reshaped the heads of infants to suit cultural mores. The Egyptians, for example, shaped infant heads to elongate them. Picture Queen Nefertiti's head.
So many choices
The next question for us was what kind of device to use.
We found a chain called Cranial Technologies Inc., which has a clinic in Annandale. In Arlington, we found Eastern Cranial Affiliates LLC, run by practitioner Joe Terpenning. Another company, makers of a helmet called the STAR Band, did not have a local office.
We first visited Cranial Technologies, whose Web site boasts about its Dynamic Orthotic Cranioplasty Band, or DOC Band, treatment. We learned that it was a growing company, sort of the Starbucks of helmets, the largest chain of clinics capitalizing on the plagiocephaly boom. The measurements would be made in Virginia, but the helmet would be made in Phoenix.
Next we visited Eastern Cranial Affiliates. Terpenning is an orthotist, a non-physician specialist in treating bone deformities, such as club foot and scoliosis. Though quite young — he is now 31 — Terpenning had designed his own helmet and won approval for the device from the Food and Drug Administration.
We were leaning toward Terpenning, so I called some parents of his patients.
One mom, Carolyn Montrose of Bethesda, said the treatment seemed to work. Montrose said the concept "took me a while to accept. . . . Putting a helmet on your infant is a little hard to swallow." I asked why she finally decided to do it. She said she asked herself how her son would react as a teenager if she told him that she could have remolded his head but didn't.
Good point, we thought.
Insurance may cover costs
Next we reviewed our insurance policy. We were surprised to find good news on Aetna's Web site: Our policy paid for the treatment in moderate to severe cases. Xavier qualified due to the extent of his plagiocephaly. This generally is determined by measuring diagonally from the right base of the skull to the left temple, and then from the left rear to the right front. In a perfectly shaped head, the measurements would be equal. For Xavier, the difference was 13 millimeters.
Aetna also requires policyholders to try repositioning and other therapy for at least three months. We'd been trying that for more than six months. Ultimately, we met Aetna's standard.
Terpenning's price, a flat rate of $2,200 (since increased to $2,600), included all visits and monthly adjustments. Aetna paid 80 percent of the cost.
Putting it on
To make a helmet for Xavier, Terpenning needed a plaster mold of his head. He put a covering that looked like a ski mask over Xavier's head and applied plaster strips. The process annoyed Xavier, but he was more perturbed at me for holding him down.
About a week later I went back to the Eastern Cranial Affiliates office with my older son, Alexander. Terpenning had created a mold of Xavier's head with an addition sculpted onto the back in a "normal" shape. The idea of the helmet is that it gently contains the areas that are pronounced while leaving room for the head to grow into the areas we wanted to expand.
We went into a back office. It looked more like a carpenter's workshop than a clinic. There were hammers and screwdrivers, welding tools, nuts and bolts. Terpenning told us that for years as a hobby he had fashioned armaments and breastplates, like the kind you see at Renaissance festivals.
Terpenning took out a thick sheet of plastic that looked like a cutting board and positioned it over the plaster mold. He put them both in a giant oven. The plastic melted over the mold and took the shape of the clear-plastic helmet in just the shape we desired.
About a week later, we came in for our fitting. Terpenning tried the helmet on Xavier, then went back into his workshop. We heard a noise like a buzz saw.
We left with Xavier wearing his new polymer shell, with hinged seams that split the device in half. A long strap fit through a buckle and wrapped around to hold the helmet in place.
Xavier tried to take the helmet off, but soon gave up. The first few days, he fussed a little but became distracted, or fell asleep.
An adjustment for all
After a while, the helmet began to smell, with the musty odor of a cast when it's removed from a broken arm. We took the device off daily at bath time and washed both it and the baby in mild suds. We also dabbed cotton balls in rubbing alcohol and wiped the helmet down daily.
Seeing Xavier with his headgear strapped on was strange; as much as we'd been reassured we were doing the right thing, the vision of your child topped with a plastic helmet gives you second thoughts.
Reactions from others ranged from mean to funny to sweet.
While we were out shopping, a boy said, "That baby's head looks funny." A girl with him said, "Shut up. That boy's head is hurt!" At our local bike store, the manager studied the device with interest, thinking it was a new model of bicycle helmet.
At a restaurant, an old man walked past our table, thumped the helmet with his finger and said, "Getting ready for takeoff?" The man left the restaurant before I realized what had happened.
Niki coped by developing a familiar routine, going to the same coffee shop, stores and parks on her outings with the baby. Familiar people didn't ask a lot of questions.
Side benefits
Wearing the helmet wasn't always a negative. It doubled as a crash helmet, dulling those sharp corners and tabletops that toddlers often bump into. One time, Xavier fell backward off the end of a slide and hit his head; he barely noticed. Another time, his brother's friend Natalie got out her hockey helmet and put it on; he enjoyed bumping his helmet against hers. They giggled hysterically at the inside joke.
At 13 months old, Xavier learned to take the helmet off. It was Mother's Day, and we had driven to the Virginia Arboretum. During the long trip home, Xavier reached up and pulled down on the Velcro strap, winning his freedom. Keeping it on after that required our constant attention.
We removed the helmet a couple of times when he had a fever or when the weather was warm. But for the most part we managed to keep it on constantly (with the daily half-hour breaks.)
Niki finally gave up as the hottest part of the summer approached. Xavier had worn it for nearly six months.
Terpenning's measurements found that Xavier's "intracranial oblique asymmetry" had been reduced from 13 millimeters to five millimeters. His ears moved about five millimeters back into alignment. Our pediatrician, Kuskowski, declared his plagiocephaly "resolved."
After the helmet came off, it took awhile for Xavier to get used to life without it. Bumping into tabletops was now more perilous. One day, we found him gently tapping his head on a wall to feel the vibration.
Questions and hopes
Last month, I got a call from Craig Cole, a father of twins who was about to go through the same process. (Twins are more likely than singletons to develop deformational plagiocephaly because they are exposed to more risk factors, such as constraint in the uterus and premature birth, and are more likely to have spent time on a respirator.) As he asked questions, I was reminded of all the things we'd thought about: The boy would have a hard time wearing a ball cap or football helmet; his glasses might not sit right; he might have a hard time getting a date.
Cole made this analogy to the Peanuts comic strip character: "When I boil this down: What was the reason Charlie Brown couldn't get a date? It was his head. Even when your head is considered normal, dating years aren't easy."
Life is tough enough without a funny-looking head, Cole said. If you can fix it, why not?
That's pretty much how we feel. We think Xavier, now 22 months old, looks beautiful. More important, he is an adorable, funny, engaging and puckish little toddler who brings us a lot of joy. You'd never know he'd spent six months wearing a helmet.
We don't expect our children to be flawless. Life is messy and complicated. We know that. We just want our kids to have a fair shot at success and happiness. Our job as parents is to prepare our children to meet the challenges. We never expected that one of those would be reshaping his head. But we're glad we did it.
Researcher Meg Smith contributed to this article. The author will be online at 3 p.m. Tuesday at www.washingtonpost.com to answer questions about his story.
