Monday, June 04, 2007


Over the last few months we've noticed Jack has some distortion on his head. We knew the likelihood of positional plagiocephaly (flat head from sleeping on their backs, usually) and moved him out of his infant carseat in the last month entirely to help him. It's usually not a big deal and corrects itself when the baby becomes more active. However, we noticed Jack had sort of a pulling toward his left side of his neck, had some facial asymmetry, and was crawling funny, so we called the doctor.

We just got back from the doctor. I'm still sort of processing everything.

He definitely has positional plagiocephaly, but the doctor isn't terribly concerned. He held Jack's head in his hands, and had John hold him down low, and looked from up above to see where we stand. Basically, we can opt to treat it with an appointment at the children's hospital (orthotist?) or we can leave it and see what happens. He said it's purely cosmetic and most children outgrow it - the fact that Jack just got out of his seat and is already showing improvement is a good sign that he'll outgrow it and it will improve with age.

We've decided, since it isn't urget, that we'll wait until his 12 month visit and check his progress before we opt for treatment.


However. When he was doing the exam of Jack's head he noticed something on Jack's side. He asked John to remove his shirt and this time asked to hold him so he could feel his torso. He has a large protrusion from his right side. John said he's noticed before, but always thought it was just how Jack was sitting. The doctor said if we leave his shirt off more often (which we, of course, seldom do) we'll notice it more often. After holding him for a bit and evaluating his torso, he said Jack has a very rare torsional deformity and scoliosis.

He said there are two types of scoliosis (the curvature one that they always checked for in grade school) and the torsional - which is a twisting of the spine. He said it's virtually nonexistant in male children. Basically, Jack's spine is twisted, or rotated, several inches. His ribs are that protrusion on his right side and it's somewhat sunken on his left side.

We don't know anything beyond that. He's referred us to a specialist at Children's and we have to call them in the morning. It was a very long appointment. He said between the positional plagiocephaly and the torsional deformity, he's much more concerned with the latter. He said if this is a lifelong problem, we may want to seek out two opinions (at Children's and Cardinal Glennon Children's Hospital).

On one hand, I feel blessed that there was nothing wrong with his head, his brain, neurologically-speaking, I mean.

On the other hand, I'm sad. I feel guilt for not having seen this myself - I'm his mother! The hundreds of times I've nursed him and I didn't see this? The dozens of times I've bathed him, and I didn't see? I can't help but wonder why, and when, and how. This is all totally raw and I'm sure I'll gain some perspective in the morning, so bear with me, but I just...don't understand, can't comprehend.

He moves amazingly well - he has this way that he kicks up one leg to thrust himself forward. Things are clicking now, in hindsight. He is brilliant and beautiful and sweet and my life - and if he has a mobility issue, we'll figure it out. But, I think it's just in our nature to want someone - something - to blame, and in our nature as mothers to blame ourselves.

I'm anxious to get some real answers and real options. I googled and googled and googled on the ride home (thank goodness for John's blackberry) and, apparently, it IS very rare because I can't find a darn thing on it that isn't a medical journal.

So, that's all I know. I'll keep you more updated as we know more. I have NO idea what this means, at all, or what they'll say at Children's, but I thought you'd want to know (and it helps to get it written down).

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