A Plagiocephaly Success Story

by Dianne Cook

(Originally posted Sept. 5, 2002)--On March 7, 2001, much to my surprise, I found out I was pregnant. Everything was going well and on June 12, 2001, I found out I was having TWINS! Kyle and Kayla were born on October 10, 2001, healthy and happy as could be.

Right from his birth, I was concerned about the shape of Kyle's head. It definitely appeared flat on one side. I addressed this issue with my pediatrician and she said, "Let's watch it and see what happens". Usually, nothing can be done until the baby is 4 months of age, and, contrary to popular belief, the flatness is not always positional, but can occur in utero. Kyle was head down my entire pregnancy, with the weight of his sister above, thus creating the odd shape of his head.

There was little I could do to help Kyle's condition until he got a little older, but I did receive some good tips. I could rotate his position in the crib, and move his car seat, so that when he was looking out the window, his head would not be resting on the flat spot. I could also try to keep him off his back as much as possible, which is quite difficult when you have a baby who hates tummy time!! None of these suggestions would necessarily correct Kyle's condition, but hopefully these measures might keep it from worsening.

There are several things to watch for, if you suspect that your baby may have plagiocephaly. In addition to the flatness in the back, the facial features may become misaligned, as well as the ears. How can you tell?? The best way to check the facial features is to hold your baby up to a mirror. Observe the eyes and mouth, specifically. With Kyle, it was obvious that his eyes were not even and his mouth was actually crooked. In order to check your baby's ears, look straight down on your baby's head. Observe the placement, using the middle of the forehead as your guide. One of Kyle's ears was far more forward than the other.

Well, at 4 months, Kyle's condition had definitely worsened. At this point, the pediatrician recommended a plastic surgeon at Boston Children's Hospital. We went to see him in March 2002. Kyle was diagnosed with one of the worst cases of plagiocephaly that he had ever seen. Head circumference measurements were taken, and Kyle was measuring at a 17mm difference between round part and flat part of his head. We went down to the National Orthotics and Prosthetics Company (NOPCO), immediately, where Kyle's head was casted for a molding helmet. The helmet would assist in molding several elements of his head. First, it would control the growth of the round part of the back of his head, allowing the flat spot to 'catch up', second, it would attempt to realign the positioning of his ears and thirdly, it would control the growth of his forehead, which would result in his facial features realigning. He would wear this helmet 23 hours a day, 7 days a week, until the plagiocephaly improved. We returned to Boston Children's three weeks after the casting to get the helmet and have it fitted properly. The adjustment was a little difficult, but after a couple days we were all quite used to our new "decoration". We would make the trip every three weeks to the NOPCO to have the helmet adjusted and, with each appointment, we could not believe the improvement!

In June, we made a return trip to the plastic surgeon. Another set of measurements was taken, and the difference in the measurement between the round part and the flat part of Kyle's head had been reduced to 5mm! This was the greatest amount of correction, in the shortest amount of time, that the doctor had seen in his career. We were ecstatic. Kyle after wearing the helmet for 3 months is proclaimed to be helmet-free!

At the end of June 2002, Kyle's head had become almost perfectly round, and he was pronounced 'helmet free'. I believe I have seen additional improvement since then.

I thank God for such a wonderful pediatrician who made sure we stayed on top of this issue and agreed flatness cannot ALWAYS be corrected positionally. It was a major decision to have Kyle fitted for the helmet. Now that I have seen the wonderful results I have absolutely no regrets.