Kayleigh's Plagiocephaly Story

Kayleigh was born on June 29, 2000. She had a fractured skull due to a forceps delivery. This caused a small hematoma to form on her skull. It is sometimes shown that children tend to favor the side of their heads on which a hematoma is, and so Kayleigh begun to favor the right side of her head.

At 6 weeks of age, we brought her in for her check up, noticing that the right side of her head was flattening out. The doctor immediately noticed that Kayleigh's range of motion

in her neck was limited to one side and that she was in danger of getting a medical disorder called Congenital Muscular Torticollis. At this point we were told to follow some neck strengthening exercises to get Kayleigh to look in other directions and told that once that was done, Kayleigh's head would soon round out.

Within a few weeks of her exercises, Kayleigh's neck now had a full range of motion although she still tended to tilt her head to the right side.

Her next check up was at 4 months of age. By this point, Kayleigh was sitting up most of the time in her exersaucer or her jolly jumper, not on her own, but her neck could fully support itself and she preferred to be upright most of the time. Her head was still extremely flat. I mentioned it once again to the doctor and once again was told that these things happen and it would round out by the time she was 6 months of age.

Her head continued to stay extremely flat on the one side - a very unsightly deformity. We had recently moved before her 6 month check up and now had a new doctor. At her 6 month check up, our new family doctor once again reassured my concerns and told me it would round out over time. He told me it was very rare that a head did not round out once a child was upright the majority of the time.

Kayleigh begun to crawl at 7 months of age - and she now slept on her side or tummy by her own choice at night. However her head still showed very little signs of improvement. Once in a while, when Kayleigh fell ill, we saw doctors who were on call, and each time (3 in total) we expressed our concerns regarding her head shape to see what they would say, and each doctor told us not to worry, it would round out.

Well this continued at her 12 month check up and so on.

At about 14 months of age I started getting very frustrated. Kayleigh's hair had come in now and it did cover the flat spot for the most part, but we had seen hardly any improvement, and as a mother, I felt concerned about all the things the doctors had told me. At this point, I took matters into my own hands.

I did not know the term positional plagiocephaly, but I did a search on the Internet for "flat heads". Soon I was digging deep into all the information surrounding plagiocephaly and craniosyntosis. I even spoke to a family member who is a pediatric general surgeon. His recommendation was to see a neurosurgeon, however, that required a referral.

At 16.5 months, I brought Kayleigh back to my doctor and insisted that we look into this. He finally agreed, and referred me first to the local pediatrician. It was a 3 week wait to get into see him. He had x-rays taken of Kayleigh's skull and ruled out the possibility of craniosyntosis. I asked for a referral to a neurosurgeon I had been trying to get into see. The pediatrician told me to wait until Kayleigh was 2 years old and we would see then and that helmet therapy did not work, even though my research proved it work wonders on children under 12 months. He did agree to send me to the neurosurgeon, although the pediatrician advised me the neurosurgeon would tell me the same thing.

It was yet another 2 months wait to get into the neurosurgeon. Kayleigh was 19 months old when we got in to see him on January 28, 2002.

We were too late. Kayleigh was diagnosed with moderate to severe positional plagiocephaly. She had very mild facial asymmetry and so we would never have to worry about problems such as TMJ. However, the deformity was basically beyond helmet therapy.

Children's' skulls grow hard at around 12 months of age, with the fontanel finally closing at around 18 months. That is why helmet therapy works best on children under 12 months, while the bones are still soft and growing.

Kayleigh was 19 months old. Her fontanel was still open, and so the neurosurgeon said we could attempt helmet therapy, however mother nature would continue to do some rounding on her own, and that the helmet more than likely would not help much. Plus, keeping a helmet on a 19 month old is much more difficult than on a 12 month old.

The neurosurgeon said if he had saw Kayleigh a year ago, he would have monitored her and then had her in a helmet. If only I had taken matters into my own hands before 14 months of age.

So now we pray for my beautiful, precious Kayleigh, that mother nature and God will help with the deformity, and we are very blessed that she will never have asymmetry associated problems.

In this story we are hoping that this educates some parents to push their doctors to see a specialist before 12 months if their doctors tell them the same things I was told. I also hope to pass the message on about prevention... I am not sure Kayleigh's was preventable, but had I known more when she was born, perhaps I could have tried more things.

*****UPDATE*****

Kayleigh just turned 3 a few months ago. There has been very little rounding out, however she is a very healthy child. She has beautiful thick hair which covers the flat spot - but in ponytails you can see the hair looks longer on the one side. When she swims and her hair is wet it is extremely noticeable. Sunglasses this summer were a struggle as one fit over her ear and the other didn't quite cover the ear as one ear is further back (her only asymmetry).