Doctor notices more cases of condition that causes flattened skulls, tilted heads
by Pat Shellenbarger The Grand Rapids Press
Wednesday May 28, 2008, 6:35 AM
GRAND RAPIDS -- It wasn't all that noticeable at first. Then, about three months after their daughter, Ellie, was born, Tom Nyenhuis said something about it.
Doesn't Ellie's head tilt to the side? he asked his wife, Lisa.
"I kind of thought he was crazy," Lisa said. "I thought, she's a newborn; they have floppy heads. I'm with her all day long. Why wouldn't I notice it?"
But then a friend said she, too, had noticed Ellie's head always tilted to the right. Lisa called her pediatrician, Dr. Ken Fawcett, who diagnosed torticollis, a shortening of the neck muscles, pulling Ellie's head to the right. Plus she had a related disorder called plagiocephaly, a flattening on the right side of her skull.
The Nyenhuises had never heard of either disorder.
Press Photo/Emily ZoladzAll better now: Ellie Nyenhuis, nearly 1, of Cannon Township, holds the helmet she wore for four months to help correct her case of torticollis, a condition that shortened the muscles on one side of her neck and flattened her head.
Dr. Dayle Maples had.
"I see it very commonly in my clinic," said Maples, a pediatric orthopedic specialist at Helen DeVos Children's Hospital and Mary Free Bed Rehabilitation Hospital.
In fact, she has seen an increasing number of babies with plagiocephaly since 1992 when the American Academy of Pediatrics initiated its "back to sleep" campaign, urging parents to place newborns on their backs to avoid sudden infant death syndrome.
Maples said parents should continue following that advice, but they also should be aware that infants who spend too much time lying in one position can develop the misshapen skull characteristic of plagiocephaly. When awake, babies should be given more "tummy time," she said, allowing the skull to develop the more-typical symmetrical shape.
On the lookout
Plagiocephaly warning signs:
• Flatness on one side or back of head.
• Irregular, unbalanced head shape
• Uneven cheeks, ears or eyes
Torticollis warning signs:
• Head rotating or tilting to one side
• Low tolerance for lying on tummy
• Poor head control
• Visible arch in trunk of body
Plagiocephaly can occur without torticollis, Maples said, but torticollis can cause plagiocephaly.
About one in 300 babies is born with torticollis, and 80-90 percent also develop plagiocephaly. In many cases, the torticollis results from the baby's position and limited space in the womb, Maples said.
Lisa Nyenhuis believes that caused Ellie's torticollis and plagiocephaly.
Ellie sat in a high chair at their Rockford-area home one recent morning, eating pancakes and bananas, offering a soggy handful to a visitor. She's a year old now and shows no sign of either condition.
"I think I actually made it worse by the way I was carrying her," Lisa said, "but I didn't know anything about it."
She usually carried Ellie with her right arm, leaving her left hand free to care for her older child, Sam, now nearly 3 years old.
Last fall, her pediatrician referred Ellie to Mary Free Bed for therapy. Using a laser scan of her skull, technicians there custom designed a plastic helmet for her to wear 23 hours a day, allowing her head to grow into a normal shape.
Twice a week, Lisa Nyenhuis took Ellie to Mary Free Bed for physical and occupational therapy.
Several times a day, she exercised her at home, stretching the muscles on the right side of her neck and strengthening the muscles on the left side.
Left untreated, Ellie's head would have remained tilted to the right, her skull would have developed an asymmetrical appearance, and her jaw would have protruded to the left.
She likely would have developed vision, hearing and spinal problems.
She no longer wears her helmet or goes for physical therapy.
"Everything's fine," Lisa said. "It was curable. It was a matter of sticking with all the exercises. I keep watching for it now."
She decided to speak publicly about it, hoping to alert other parents.
"It was amazing to me how common it was," she said.
I just thought this was a really great article explaining what Torticollis & Plagiocephaly are and how they are related. It sounds like Ellie's case is very similar to Emily's. I am happy to read that Ellie is now doing so well! Just thought I would share.