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Published in CenterView on January 28, 2013
Abby, Lee and Miller Blackburn
Abby, Lee and Miller Blackburn

Occupational therapist’s children’s book helps shed light on common infant deformity

By Matt Westerfield

For four months, wherever Abby Blackburn took her 1-year-old son, Miller, people stared at him and his little blue helmet.

Miller playing at the beach
Miller playing at the beach

They asked blunt and silly questions: “Are you an over-protective mom?” “Is he pretending to be a racecar driver?”

Although plagiocephaly, or “flat head syndrome,” has become more and more common in recent years, the stares and the questions reflected a lack of public awareness about why a toddler might be seen wearing what looks like a boxer’s sparring helmet.

“My husband and I wondered how we were going to tell him this story one day, and I thought, ‘surely there’s a children’s book on this,’” said Blackburn, an occupational therapist in University Hospital. “I started Googling it, and I couldn’t find anything.”

So she wrote one instead.

Now, four months after Miller graduated from his helmet, Blackburn’s children’s book, “My Little Blue Helmet,” is available for sale online. Blackburn hopes it will help relieve the fear and anxiety other parents face when hearing their child has a cranial deformity.

“When Miller was real small, we started noticing that his head was flat, on the back-right side,” Blackburn said. “And his head just wasn’t a perfectly round shape.”

Her pediatrician recommended positioning Miller in different ways, and after several months without success, referred her to Dr. Ricky Clay, professor of surgery and a plastic surgeon.

“Dr. Clay immediately said Miller had plagiocephaly, and he recommended a STARband helmet.”

The incidence of plagiocephaly in newborns has rocketed upward since 1992, when the American Academy of Pediatrics introduced its “Back to Sleep,” campaign, which recommended that newborns be laid to sleep on their backs. The campaign was very effective at reducing Sudden Infant Death Syndrome, but at the same time, infant cranial malformations have increased by some 600 percent.

Fortunately, plagiocephaly can be easily corrected when diagnosed early, which is where the helmets come in. Before joining UMMC in late 2011, Clay served as co-director of the Cleft-Palate and Craniofacial Deformity Clinic at the Mayo Clinic in Minnesota, where he typically would fit three-to-five new children with helmets per week.

“We need to get them into the helmets around 5 months,” he said. “I have a very narrow window to work with. The older they are when they get the helmets, the longer they have to wear them.”

Once the child reaches about 2 years old, his brain and skull have finished growing.

“The head has to grow for this to work: That’s the first thing we have to communicate to the parents,” said Rick Psonak, certified prosthetist in the Department of Orthopedic Surgery’s Division of Orthotics and Prosthetics. Psonak fitted Miller with his helmet last year.

“We’re not squeezing a water balloon,” he said. “The bone is going to grow in the path of least resistance. So when they get these helmets, they fit perfectly and there is soft foam in there, so it’s not squeezing the head.”

Psonak said his department has only been working with the helmets since last March when the staff completed certification training at Clay’s encouragement. Since then, he said, department staff have tackled roughly 50 cases.

They don’t make the helmets at their workshop at University Rehabilitation Center; they take casts of the infants’ heads and ship those to Orthomerica, where the helmets are fabricated and sent back.

“We fit them and we’ll hollow out the foam gradually as the skull grows so that the head gets more rounded where it’s supposed to be,” Psonak said. The helmets typically stay on four to six months, 23 hours a day.

“It’s not painful,” Blackburn said. “My son never noticed it. You go for check-ups and adjustments every two weeks, so it’s an ongoing process.”

She said it was last September when Miller was almost ready to come out of his helmet that the idea to write a children’s book struck her.

“The publishing company that I used, they hired an illustrator,” she said. “I sent them pictures of my son and his room and specifics that I wanted in the book. It’s a question-and-answer book.”

Blackburn began working at the Medical Center in 2010, right after graduating from the School of Health Related Professions. Her husband, Lee Blackburn, also calls UMMC home; he works as a nurse in the SICU.

As for Miller, now 17 months old, life hasn’t changed that much.

“There wasn’t much of a transition for him,” Abby Blackburn said. “He’s a laid-back kid, so from the day he went into the helmet to the day he came out of the helmet, he never acted differently.”
Psonak said Blackburn is a great role model for other parents.

“There’s a lot of fear going into it,” he said. “Parents wonder if the hassle is worth the benefit of having the helmet. So having someone like Abby is such a good deal because she can say, ‘Listen, I’ve been through it. Here’s my book, there’s a process, there’s a benefit. It’s not as bad as you think.’

“I think her book is going to be a big help because most people don’t know a lot about it.”

“It was definitely a journey,” Blackburn said. “I don’t think anyone understands what it’s like until they’re gone through it themselves.”

Then she added: “It felt weird not being stared at anymore.”