Edmonton mom raises awareness about condition that requires baby to get head-shaping helmet
Angie McIntosh noticed her baby boy couldn’t turn his head to the right when he was six weeks old. Dylan McIntosh also had a strange flat spot on the left side of his head.
Otiena Ellwand, Edmonton Journal February 6, 2015
Angie McIntosh noticed her baby boy couldn’t turn his head to the right when he was six weeks old.
Dylan McIntosh also had a strange flat spot on the left side of his head.
McIntosh bought him an ocean-themed mobile and put a mirror in his crib to try to encourage him to turn his head. He refused, rolling over to look at it instead. McIntosh started to worry as the problem worsened. She said his head appeared to become more misshapen every day. One ear was starting to shift forward.
“It’s devastating to see your child’s head getting deformed. It’s really hard,” McIntosh said, breaking into tears.
She learned six-month-old Dylan, has positional plagiocephaly, a deformation in the bones of the skull that causes asymmetry, and torticollis, the shortening of the neck muscles so the head can only turn to one side.
A study conducted by a professor at Mount Royal University in Calgary and published in 2013 in the academic journal Pediatrics, found nearly 50 per cent of infants have some form of plagiocephaly. In most cases, the flatness was minor and will mend without serious intervention. For others, it could lead to an asymmetrical skull and facial distortions, the study says. In that case, a specialized helmet to reshape the infant’s skull and physiotherapy may be required.
The condition does not affect the brain’s development.
Doctors have seen an increase in the number of infants with plagiocephaly since the 1990s, when parents were encouraged to put their babies to sleep on their backs to prevent sudden infant death syndrome. Plagiocephaly develops when pressure is put on one part of the baby’s head from sleep or staying in one position for prolonged periods. Premature babies are more likely to have flattened skulls because they are softer than those of full-term babies. Dylan was born five weeks early.
“The Back to Sleep campaign was great because it saved babies lives, but the trade-off has been then babies tend to spend more time on their backs and then some mild plagiocephaly has happened,” said Dr. Sarah Gander, a member of the Canadian Paediatric Society Community Pediatrics Committee. Gander said family doctors and pediatricians see mild to moderate plagiocephaly cases on a weekly basis.
Doctors recommend parents encourage tummy time for their babies, keep them upright when they can, and do some physiotherapy exercises, she said.
“I’m doing all of these things and nothing is making him turn his head,” McIntosh said. “If you notice something like that happening and all those suggestions aren’t working for you, then you have to look at there might be a cause for that, such as that torticollis.”
McIntosh took Dylan to see Lizz Zahary, a physiotherapist at Summerside Children’s and Sport Physiotherapy in southwest Edmonton.
Zahary said in many cases a tight neck comes with plagiocephaly. Once that’s treated, it allows parents to safely reposition their child.
“As their skull is growing, the brain wants to be round, but it takes the path of least resistance. If there’s constant pressure on one side of the head, which there often is if their neck is tight in one direction, it fills out everywhere except in that spot,” she said. “If left on its own, if there is constant pressure on one part of the head, it just gets worse.”
Dylan’s case is severe enough that he requires a helmet, Zahary said.
That’s not often the case. She only refers about six children a year to the Pediatric Head Shape Clinic at the Stollery Children’s Hospital, where they can get a prescription for the helmet.
“Angie was doing everything right, she was following all the advice, but every once and a while these little guys are pretty stubborn… If they’ve just decided out of habit to sleep on one side, it just gets worse and worse,” Zahary said.
Gander said helmet therapy is controversial, with mixed evidence about effectiveness. The helmet has to be worn for 23 hours a day for four to six months.
“The place helmets come in is in moderate to severe cases when the kid is relatively young and everything else has sort of been ruled out,” she said.
In September 2011, Alberta Health Services stopped funding the helmets because studies found that mild to moderate cases of plagiocephaly could be improved by active repositioning therapy and have similar long-term cosmetic outcomes as helmets.
The helmet costs $2,500, including the assessment, diagnosis, custom helmet fabrication and biweekly orthotist visits for four to six months to adjust the helmet.
McIntosh feels there’s a lack of awareness and information for parents about plagiocephaly. She’s considering starting a support group for parents in similar situations.
“Listen to your heart, listen to your gut, if you’re trying everything that they suggest and nothing seems to be working, I would just recommend seeing a physiotherapist because they specialize in that.”
Source Edmonton Journal
The Incidence of Positional Plagiocephaly: A Cohort Study, Mawji A, Vollman AR, Hatfield J, McNeil DA, Sauvé R. Pediatrics. 2013 Aug;132(2):298-304. doi: 10.1542/peds.2012-3438. Epub 2013 Jul 8.
Prevalence, risk factors, and natural history of positional plagiocephaly: a systematic review, Bialocerkowski AE, Vladusic SL, Wei Ng C. Dev Med Child Neurol. 2008 Aug;50(8):577-86. doi: 10.1111/j.1469-8749.2008.03029.x. Full text
Dealing with Your Baby’s Flat Spot Canadian Family
New Baby Guide. Canadian Family
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National Association for Plagiocephaly Orange County CA