‘Cranial-shaping’ helmets direct growth for a more symmetrical skull in babiesWhen their firstborn was about two months old, Andrea and Richard Lays started noticing their “perfect” child was not exactly perfect. Eleanor’s head was unevenly shaped — definitely flat on one side.
By: Pamela Knudson, Grand Forks Herald
When their firstborn was about two months old, Andrea and Richard Lays started noticing their “perfect” child was not exactly perfect.
Eleanor’s head was unevenly shaped — definitely flat on one side.
“As parents, you’re oblivious. You’re so happy, so excited by every little smile,” Richard said. “You don’t look for defects.”
Irregular head-shape can be subtle, Andrea said, and even harder to detect in babies with a full head of hair — like Eleanor.
“We don’t know if we have something genetic” that caused her condition, Andrea said, but “I think it’s more of an after-birth issue,” probably due to Eleanor lying on her back.
It can also be traced to the way the baby was carried during pregnancy or the result of methods used in the birth process.
Infants’ skulls are so soft they tend to flatten where the head meets the sleep surface.
“Babies spend half of their young lives flat on their backs,” Andrea said.
When the Lays asked their pediatrician about Eleanor’s head shape, they were told “it would fix itself,” Richard said. Some doctors may feel there’s a stigma attached to the helmet and, if true, that may explain why they discount it.
“I was told to put her down on her tummy for as much time as (possible),” Andrea said.
At their daughter’s six-month check up, the young parents consulted another pediatrician who recommended a “cranial shaping helmet,” custom headgear that guides skull growth and is typically worn by infants who are 1 and younger.
“As a parent, if you can prevent (the need for) braces or migraine headaches, you’d rather do that,” Andrea said.
When the Lays’ twins Sophia and Rosaline were born in January, “we were hypersensitive” to skull shape because of what they went through with Eleanor, she said. Their pediatrician again recommended the helmet for both girls.
“Because of our experience with Eleanor, that’s how we know it’s going to work.”
She brought the twins to the orthotics department at Altru Health System in Grand Forks recently to have their helmets custom-fitted by Steve Sattler, certified orthotist.
“The head is like a water balloon. If you set it on a table, it flattens out” from the effect of gravity, said Sattler. The parallel side of the head also can flatten.
“The ear moves forward and up on one side, and down and back on the other. It affects the jaw, so when the teeth come in, they won’t match.”
The twins had been in his office about two weeks earlier to have their heads scanned by special equipment that captures their exact measurements. The picture took 1½ seconds; then the data was sent to the company, Orthomerica in Orlando, Fla., where helmets were specially made — each with a unique cutout area where growth is desired.
Head measurements are compared with normal ranges, Sattler said. They fall into ratings 1 through 5 that represent lesser to greater deviation from the norm.
“We try to get everyone to 1,” he said. If the numbers exceed 2, he advocates for use of the helmet.
“Our goal is not to be perfect, but to put them into a normal range.”
Since the STARscanner was installed in December 2007, Sattler has fitted 669 children with helmets including more than 40 since March 1.
The technology, purchased by Altru Health Foundation, is the only one of its kind in North Dakota, he said. The closest others are in Minneapolis and Rochester, Minn., Sioux Falls, S.D., and Winnipeg.
It replaces the use of plaster molds which required the baby to be still for 10 minutes.
“You get better results because you have more information compared to the plaster mold,” Sattler said. “We’re darn happy with this (scanner).”
During the twins’ visit, he marked the final trim lines on their helmets, then ground off those portions at the neck and around the ears to allow a more comfortable fit.
The helmet “sideburns” are designed to keep the helmet from rotating as the skull grows, he said. Holes are drilled in each helmet which allows him to see that the foam is not touching the head.
Over time, when the helmet is removed, the holes may leave marks on the skin that show where the helmet is touching. Such marks indicate to the family that they should come in to see Sattler so he can make adjustments to the foam thickness inside the helmet, he said. If needed, foam can also be added to keep the helmet snug.
On this visit, Sattler said Rosaline’s peripheral vision is affected by her head-shape. “On one side, she has no peripheral vision and on the other side she can almost see back to her ear.”
The helmet isn’t squeezing the head, Sattler said. “It’s more directing the growth. We’re relying on future growth to straighten that (asymmetrical area).”
In the first 3 months of life, head circumference changes more than two inches, he said. From 3 to 8 months old, it changes another 1¾ inches. And from 8 to 12 months, it changes ¾ inch.
The period of rapid growth is the best time for use of the helmet.
After that, surgery — sometimes in combination with a helmet — is needed to correct irregularities, he said. The FDA allows the use of the helmet until age 18 months.
Babies eventually wear the helmet 23 hours a day, but need several days for adjustment. They start with one hour on, one hour off, and progress to more time each day until Day 5.
The twins will visit Sattler regularly for the next few months for additional scans and to adjust the helmet’s foam thickness. After the initial fabrication of the product, all helmet work is done in-house, Sattler said.
“We document the change in order to know where to put the space,” he said.
The child can regress if the use of the helmet is discontinued too soon.
Because the twins were fitted for the helmet at an earlier age than Eleanor, the Lays are hoping they will only have to wear them for three months, rather than the six months that Eleanor did, Richard said.
Now, with all three of their children having needed the helmets, Andrea surmises, with a chuckle, “We build soft skulls.
Hard to detect
An obstetrician-gynecologist at Altru, she understands why parents may not detect the problem.
“People look at the face of the baby. It’s something you can’t really notice with the naked eye.”
When she mentioned Eleanor’s head shape to her family, the baby’s adoring grandparents said, “Eleanor doesn’t need a helmet — she’s perfect!” Andrea recalled.
Richard said new parents may face skepticism from their parents who are unfamiliar with the treatment. “They say, ‘We didn’t have it growing up… and we all survived,’” he said. “It’s hard to go against your parents.” But the ramifications of ignoring the condition go beyond the aesthetic, Andrea emphasized.
“It’s not just cosmetic. There are health issues involved — headaches, it’s hard to fit eyeglasses if the head is not corrected.”
With Eleanor, she didn’t worry about the potential effect on brain development, she said, “but I was worried about peripheral vision.”
She also worried that the helmet might be so heavy it would impede her baby’s ability to meet developmental milestones. It didn’t, she said, and in fact Eleanor was ahead in some areas.
‘A lot of work’
Parents whose children need a helmet should be prepared for additional hassle, Richard said. Keeping the helmet clean “is a lot of work.”
“In the summer, when Ellie wore her helmet, it smelled like a dirty locker room. It was definitely an eye-opener.”
The daily hour that the helmet was off was dedicated to cleaning it, as well as Eleanor’s hair, he said.
“When parents come in and say, ‘This helmet smells bad,’” Sattler said, “I tell them it’s the smell of success.”
On the plus side, Andrea said the helmet served as head-protection when Eleanor was taking her first steps.
“It was kind of nice when she was learning how to walk, and the dog would knock her down.”
What she and Richard don’t want for their kids is to become targets of bullying.
An improved head shape “becomes one less thing to make fun of,” he said.
“I’d rather do it now, when they won’t remember it,” Andrea said.
In 1992, a nationwide movement, called “Back to Sleep,” was launched to prevent deaths caused by SIDS (sudden infant death syndrome) that called on parents to place babies on their backs.
The movement gave rise to an increase in “irregular heads,” Sattler said.
Richard has noticed that more people are using the helmet now, especially in this area, which makes things easier for affected families.
“I think people are more aware of it here,” he said. “When we’re out at a restaurant or playground, people come up and tell us that their child or grandchild went through this therapy.
“It’s kind of an icebreaker.”
And he’s noticed that more Facebook friends have posted photos of their kids in helmets.
“It’s kind of helpful, you don’t feel so alone,” he said.
Websites are popping up that offer fun and humorous stickers for the headgear.
A friend of Richard’s posted a photo of his child whose helmet sticker shows a deflated tire with the caption: “I’m fixing my flat.”
For parents who may be wondering if their child is a candidate for this treatment, he said, “Don’t be afraid; the computer (scan) will tell you if you need (the helmet) or not.”
Richard’s only worry is, “because you’re so tired,” he said, “you hope you put the right helmet on the right kid.”
The cranial-shaping helmet has worked as the Lays hoped it would for Eleanor.
“It’s unbelievable, it really truly is,” Richard said. “It’s miraculous what it did.”
Knudson covers Health and Family for the Herald and can be reached at (701) 780-1107, (800)477-6572, ext.1107 or email@example.com.