Thursday, May 7, 2009


So my poor little bub has plagiocephaly. Here is a note we recently sent to family and friends to explain what's up:

Hi friends .. sorry for the “mass” e-mail - but rather than explain the same situation over and over again we thought we’d send out one “informational” e-mail to those of you who are going to be seeing our darling son Jack this summer, either in person or pictures.

Jack has been diagnosed with a treatable, fixable condition called unilateral positional plagiocephaly. The back right side of his head has become somewhat flattened - from Jack’s propensity to always sleep on that side of his head (despite our efforts to keep him off of it over the past few months.) In the early 90’s - when the put your baby on his/her "back to sleep" campaign began - the incidence of SIDS (sudden infant death syndrome) dropped by something like 40 percent. Unfortunately, the incidence of plagiocephaly shot way up. When we all slept on our tummies, this wasn’t an issue. Now that babies sleep on their backs - plagiocephaly affects 1 in 70 babies. However, as plagiocephaly is treatable - and SIDS obviously is not - the healthcare community views plagiocephaly as the lesser of 2 evils.

The slight flattening of Jack’s head has also caused slight changes to some of his facial features and the position of his right ear. So - to help Jack’s head and face round out properly as he grows - he will be outfitted with a special orthotic device sometime in May and wear it this summer - it looks like a helmet - you have probably seen babies wearing these as it is an increasingly common condition. Once his treatment is complete - there should be no lasting effects on either his head or his face.

Jack’s brain and development are not affected by the plagiocephaly. So while in essence this is a “cosmetic” condition - it is important that it be corrected while his skull is still soft. We feel bad for our little guy - but have been told that babies adjust to the helmets very well. He will wear it 23 hours a day - for a minimum of 3 months. We were also told that we haven’t done anything “wrong” as parents - some babies have softer skulls than others - it's more common in boys -- and in fact our efforts for the last few months to keep him off of his head while awake and to reposition him while sleeping have kept his condition from getting worse. Still - a specialist at Children's has determined that treatment is necessary - and so our Jack will be in his corrective “helmet” this summer. We know that he will rock that helmet, and look as adorable as ever.

So .. when you see Jack in person or pics in a month or so ... now you will know that he is not playing on some new 6 month old baby lacrosse team. He is doing just fine, just needs a little reshaping.

Best -

A & J (and Jack!)

Ugh. We'll get through it. But it's always something.. you know?


Steph said...

I've been reading your blog since before Jack was born and I have loved hearing all the triumphs that you have celebrated since your battle with infertility. My husband and I also suffered with infertility and waited an excruciating 21 months to get pregnant. Now our son, like Jack, is facing a helmet. I have cried until I didn't think I could cry anymore but I'm finally okay with the treatment, I think?? I just wanted to wish you guys lots of luck as you embark on this journey. I can't wait to see pics of Jack in his helmet and hear stories of how his treatment is going. Once again your blog will help ease my fears as we transition into this phase of life.



ONE OUT OF SIX said...

Aw Steph, we'll get through it!! I am dreading the day he gets his helmet - but you just have to take each day as it comes, right? We'll make it.

Plagiocephaly Awareness said...

Hi! I had twins almost 14 months ago and one of them, Alexander, developed plagiocephaly due to torticollis. Please, read our story at After using the Doc Band he still has some flattened so please read to know what to ask, and if you can help me spread the word!
Alexander's mom