Plagiocephaly: Mother learns misshapen heads are correctable

Baby's first helmet


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So our son has a flat head.

Well, it's not so much flat anymore. With what our specialist called "aggressive repositioning" -- which is pretty much never letting the baby lie on the right side of his head -- the actual flat spot is gone.

What we're left with now is possibly a little bit worse. The soft structure of Gavin's skull allowed the right side of his forehead to push forward -- pushing his right eye socket out just a tidge, and making his right ear a bit offset from the left.

Technically, according to the laser scanning machine poor Gavin was subjected to -- for all of about three seconds for the actual measurement -- the symmetry of his head is off exactly 13.3 mm, or about the size of a raisin.

Like thousands of other babies in the United States, Gavin has plagiocephaly.

It sounds much, much worse than it is. If you break it down, it is simply Greek for "oblique head."

Plagiocephaly often leads to the baby's head being shaped like a parallelogram instead of round and symmetrical.

When you're looking straight at Gavin -- his big round face, chubby cheeks and blue eyes -- you can't tell anything's wrong. But, if you happen to look down over the top of his head, you can see the misshapenness of the back of it and the misalignment of the ears.

And so, Gavin got a helmet.


At 3 months

My husband, Jim, and I noticed the flat spot on the back, right side of the baby's head, when he was right around 3 months old. We mentioned it to the pediatrician, who told us we needed to have him do more tummy time and try to not have him lie on the right side of his head.

At 4 months, the flatness was starting to improve, but by that point the rest of his head was off, and they referred us to the cleft-craniofacial clinic at Children's Hospital of Pittsburgh of UPMC.

Our first appointment was in June. Regina Fenton, an advanced nurse practitioner who specializes in plagiocephaly, explained the condition.

It's most common in boys, most commonly affects the right side of the head and has increased drastically since the American Academy of Pediatrics in 1992 began the Back to Sleep campaign to reduce the incidence of Sudden Infant Death Syndrome.

The campaign has been hugely successful, reducing the number of deaths from SIDS by 40 percent, but it has led to an onslaught of flat-headed babies. (Don't believe me? There are now websites that sell stuff for these kids, including one, flatheadedbaby.com, that made me laugh out loud.)

Ms. Fenton started us on the repositioning regimen. Gavin was not to lie on his right side -- ever. We had to prop a rolled up towel in his carseat to keep the back, right side of his head from resting on it, and we pinned a rolled-up towel to the right side of his pajamas every night at bedtime.

Remarkably, he was completely nonplussed by our efforts.

At the same time, we started him in physical therapy.

A side effect of plagiocephaly for many infants is torticollis, in which the neck muscles on one side become weakened.

Gavin had difficulty with range of motion looking to the left so he needed to have PT, too.

He went once a week, and after about four sessions, the therapists said he was right where he ought to be. However, the therapy continues, because as Gavin continues to hit developmental milestones -- particularly crawling and walking -- we are told that the torticollis could come back.

But, back to the helmet.


At 6 months

We returned to Ms. Fenton at Children's when Gavin was 6 months old. She told us that even though there is ABSOLUTELY NOTHING WRONG with Gavin, cosmetically he's got an odd-shaped melon.

She recommended the helmet, which is designed to exert slight pressure on the parts of the skull that need to be pushed back, and allows the other parts of the skull to grow unencumbered.

It should make a dramatic improvement, she said.

We scheduled an appointment with Union Orthotics & Prosthetics Co. on Liberty Avenue, Downtown.

As we were waiting to go back to be measured, another woman was leaving with her son, who lo and behold was wearing his own helmet.

(It's funny, I don't think I ever in my life saw a baby wearing a helmet before the prospect was out there for Gavin. And then, all of a sudden, they were everywhere -- an adorable little girl wearing a pink one at a Pirates/Phillies game, a very cute little boy wearing a blue one at Kennywood.)

I introduced myself to the woman, Jocelyn Corcoran, and told her that I was a reporter -- and Gavin's mom -- and asked if I could talk to her.

Her story is almost the exact same as ours.

Her son, Braylon, who is 10 months old, developed a flat spot very early on, also on the right side. He was five weeks premature -- which, according to Ms. Fenton, increases the likelihood of plagiocephaly.

"We just kept hoping it would go away," Ms. Corcoran said.

But it didn't. Braylon ended up getting his helmet at 7 months.

For him, it was uneventful.

"He's a pretty mild-tempered baby," she said. "He actually didn't mind at all."

To get the maximum benefit, the child must wear the helmet for 23 hours a day, generally, for anywhere from three to six months.

"If it's only a couple of months, in the whole grand scheme of his life, it's not really a big deal," Ms. Corcoran said.

That's what I kept telling myself.

Luckily for us (I guess), Gavin's asymmetry measured high enough that our insurance would cover the cost of the helmet. If not, the price to get one and have repeat visits to check the progress would be between $2,000 and $3,000.

Dr. Anand R. Kumar, a staff pediatric/plastic craniofacial surgeon at Children's, said for children whose plagiocephaly is not reversed by positioning or physical therapy -- which has a success rate of about 80 percent -- the helmet is a good idea.

"Part of it is treating the parent and their relative level of anxiety," he said. "The child isn't complaining."

The other thing, he emphasized is that it really is cosmetic.

"If you don't get to a center and get a helmet, the kid's going to be fine," Dr. Kumar said. "Flat spots happen."

But, he also said, "If it were my kid, and I had the resources, I'd probably get a helmet."

Us, too.

We ordered Gavin's in a lovely shade of blue and picked it up on Aug. 24.

It's very light -- it only weighs about 6 ounces -- and opens on the right side with a velcro strap.

Made out of plastic and foam, it fits snugly over his head and has cutouts for his ears and holes drilled in it for ventilation.

He looks adorable.

As the orthotist from Union was putting it on him for the first time, Gavin didn't cry at all.

His mother did.

It was a whole combination of things: Sadness. Love. Guilt. Shame.

They all related to the idea that I care about this little human being more than anything in all the world (except for his big brother, of course), and it was our fault he was going to have to wear this stupid helmet.

I didn't want people to think we are bad parents.

Logan (the older brother) is 3 years old. When he was an infant, he, too, developed a flat spot. His was minor, and right in the middle of his head. It went away by itself.

With Gavin, since we knew Logan got a flat spot, we were extra careful -- or so we thought. We rarely laid him in his crib except when he was sleeping.

Instead, we put him in the swing (which he loved) or the bouncy seat and allowed him to watch his brother playing.

We didn't know that the right side of his head was still being flattened even though he was sitting upright.


On with the helmet

During the first wearing, we left Gavin's helmet on for about 10 minutes to check for any irritation. The orthotist shaved the foam inside down in a few spots to make sure he wouldn't be bothered -- really the only side effect from these things is irritation or skin rash -- and we were out the door.

Later, as I was putting him into his carseat, I went to kiss Gavin's head, like always.

I kissed his helmet instead.

After a five-day phasing-in period (the first day Gavin only wore the helmet for an hour on and an hour off), we worked our way up to 23 hours a day.

During his off hour, the helmet and Gavin's head get washed. It was explained to us that the helmet will get funky regardless, and that it ultimately will smell like a gym shoe.

For the Corcorans, Braylon's head had already shown great improvement after just three months.

"I can definitely see more roundness in the back," Ms. Corcoran said. "I was apprehensive to get it, but now that you see results, it's good."

I hope so.


Correction/Clarification: (Published September 6, 2011) Infant Braylon Corcoran was prescribed a helmet to correct plagiocephaly. His name was misspelled in a caption in Monday's editions.

Paula Reed Ward: pward@post-gazette.com or 412-263-2620. First Published September 5, 2011 4:00 AM


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