This is a reasonably new child issue that has arisen over the past 20 years. About 20 years ago doctors began recommending that infants sleep on their backs to reduce the incidence of SIDS (sudden infant death syndrome). In fact this advice has dramatically reduced the number of SIDS related deaths each year. The flip side of things (pardon the pun) is that incidence of positional plagiocephaly have risen. Once this problem afflicted 1 in 300 children, today it affects 1 in 5 to some degree. Interestingly, it appears most pediatric doctors aren’t very educated on the topic and it can lead to some confusing diagnosis and recommendations.
So why do I know about this, yes, our perfect little girl isn’t absolutely perfect. She has a mild case of plagiocephaly. So what does one do when your doctor says you might have a problem? You search the web of course. This gives your problem a name. Then you drive down and you find out that it is 3 months later than the ideal timeframe to address the problem. Then you learn your options, there aren’t many; work with an orthodist to have a helmet made that the child wears 23 hours a day for 4 to 6 months in hopes of the head will grow out in the areas it is flat, or you can do nothing try to keep them off the flat spot and hope for the best.
So what do you do? We started out with an orthodist. These are nice folks, but they have a vested interest in the decision you make. They aren’t doctors; they are sales people who make orthodic devices. The ones we went to did a laser scan of Siena’s head and said she had a mild case of plagiocephaly. They said it was too late in her development to guarantee the results (the best time to attack the problem is from months 6 to 9) but that they would probably create some cosmetic improvement. They did tell us that she was not suffering from any facial asymmetry (this would be the real issue that you would get a parent to go the helmet route) so it was up to us. However, luckily, for us one of the scores on her exam was just high enough to get us some insurance coverage, would we like to order a helmet today?
As you might expect, there actually is a doctor who understands these things and can tell you what you need to know, they are called pediatric neurosurgeons. These folks do some serious medical things, and plagiocephaly is probably one of the easier things they deal with. In Orange County there are only 2 pediatric neurosurgeons, yes that’s right only 2. So before we went to see anyone else, we went to them. First we got very lucky; a cancellation got us an appointment. We met with Dr. Loudon. He assessed Siena and then gave us his thoughts. He told us Siena was one of many children who had this happen and that in her case and any other mild case he never prescribed a helmet. He explained it might or might not make a difference and that the only value for her would be cosmetic. He told us a lot about how the situation comes about and how far too many people do the wrong things with a misguided diagnosis. Unless there was serious facial asymmetry he would not recommend we go the helmet route. He also told us that most pediatric doctors didn’t understand the problem and often directed their patients to orthodists. As you would imagine a lot of folks get bad advice.
As we learned more about this problem we also found an interesting gathering of parental support groups who seemed to rally around the helmet treatment like a club. How to decorate the helmets, mixed messages on if treatments made the situation better or worse, all sorts of non professional confusing opinions. Some people had children with perfectly round heads and others were suing orthodists. Not one of them mentioned going to a pediatric neurosurgeon for a medically professional opinion. To me this is very frightening, the dark side of the internet, when the bulk of the information is coming from common people like us who don’t know and are driven be fear and vanity. Here is what I do know; a helmet for your child costs a few thousand dollars and many months of heart-ache. The best specialists in the field cost s a few hundred dollars to help you make a better decision. I have seen pictures in my research of children who were badly afflicted and benefited from orthotic treatment. It is absolutely the right thing in a few cases. But, it looks like it might not be in most cases.
Lisa and I went out and bought a video monitor for Siena’s room and we are diligently watching after her to make sure (as much as we can) that she is not lying in the same spot too often. We are both game for waking up at night to roll her over to save her the experience of having to wear a helmet. If we are lucky her head will find its way to round on its own over the next 12 months. If we are not she may have a centimeter or two of asymmetry on the back of her head. Either way she will always be perfect in our eyes and we will always seek out the best treatment for her when we don’t know what to do.
I realize this is a pretty serious posting, not quite my usual style. But for friends with new babies or those who might have one someday, it is all about tummy time and repositioning. We wish someone had told us sooner, but I guess it is our job as parents to seek out information and learn too. If you know someone with a new baby share this story, it is a simple thing to do and so worth avoiding.
