HAT'S OFF TO MOM, PUT MY BEANIE BACK ON

Even when her older sister plays dress up with her, 15-month-old Brooklynne refuses to remove her soft white beanie hat. It's her favorite one. Brooklynne's affinity for hats followed a six-month stint wearing a specially designed helmet, known as a cranial remolding orthosis (CRO).

"I think she likes the white one the best because it is a little bit snug on her head, a feeling she got used to with the helmet," says her mother Marina. When the CRO came off, Brooklynne kept touching her hair and bumping into things with her head because she was so used to wearing a helmet. "I thought a beanie hat would help with the transition," explains Marina.

Trading in a helmet for a hat doesn't sound so bad, especially when it comes to sleeping. But it didn't take long for blue-eyed Brooklynne to adapt to wearing the orthosis day and night. Her only break from it was her morning bath time, when her mother would thoroughly wash and dry Brooklynne's hair, and do the same to the interior of the helmet with rubbing alcohol.

At seven-months old, Brooklynne was diagnosed with plalgiocephaly, also known as "Flat Head." This can happen to infants when they have soft bone structure or if they are left in the same position too much, as was the case with Brooklynne. As a newborn, Marina was conscientious about making sure her daughter slept on her back, as recommended by pediatricians. Brooklynne started turning in her sleep, favoring her right side. Even with pillows to reposition, Brooklynne would still find a way to wiggle on to her side. Gradually, her head started losing its roundness.

Unaware of plalgiocephaly and seeing only a beautiful baby girl, Marina at first was not worried about her daughter's head shape. But comments from family, friends, and even strangers made her take a closer look. At Brooklynne's four-month check up, the pediatrician noticed it as well and referred them to a plastic surgeon and eventually to SPOT to be fitted with a CRO. "At first, I was not aware of the seriousness of Brooklynne's condition, but as soon as I learned that if not taken care of, her condition could cause a lot of other problems, I acted immediately," recalls Marina. Without correction, children with plalgiocephaly can end up with vision problems do to lack of symmetry with the eyes and extensive cranial operations.

A CRO allows babies to sleep in any position yet it keeps pressure off the flat spots. Correction usually happens in 8-16 weeks for infants beginning treatment between four and seven months. However, in Brooklynne's case since she did not begin treatment until she was seven-and-half months old, she wore an orthosis for six months.

Treatment for plalgiocephaly is most effective for infants between four to seven months, when the head is growing about one centimeter a month. This rapid growth can be harnessed within the orthosis to produce rapid change in the desired direction. At this point, an infant is starting to develop more head control and can tolerate the additional six to eight ounces of weight from the helmet. "It is actually the infant's own growth that is the most active part of any orthotic treatment," explains SPOT prosthetist Jim Liston. Between eight to twelve months, the skull still grows quickly, but the rate drops to .5 centimeters a month. Growth slows down even more during the 13-18-month period and the skull becomes thicker. "Change is still possible in these older babies, but change is slower and generally requires a longer treatment program," says Liston.

Marina and Brooklynne were regulars at SPOT, sometimes coming in two or three times a week. "Any time I called and was concerned, they got me in the same day," says Marina, recalling how exact the helmet had to fit and all the necessary readjustments. "We feel so lucky we found someone who really cared. SPOT truly has an amazing staff," says Marina.

When Brooklynne came home wearing a CRO, it was an adjustment for the whole family. "At first Brooklynne cried-and so did I. We were all so concerned that it must be uncomfortable," remembers Marina. She and her husband would sometimes end up taking if off at night, but then Marina realized that without strict consistency in wearing the helmet, Brooklynne's condition would not improve. "If you start taking the helmet off, you are not doing any favors for your child and it becomes harder for them to get used to it," explains Marina.

The CRO just became part of Brooklynne's life. Marina proudly watched Brooklynne take her first steps on her first birthday, wobbling around with her helmet on. Having mastered the skill of walking, Brooklynne has now moved on to wrestling with her older brother, and despite the giggling and jostling, that snug white beanie stays put.

[Brooklynne was fitted with a STARband orthosis with sunflower design]

By Peta Owens-Liston
May 2005

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