I’ve seen a number of questions on various FaceBook groups lately (which are wonderful, by the way.  If you haven’t found a FB group for PS let me know and I can direct you to some), asking things like,

“My 2 year old (or my 6-month old) was just diagnosed with Poland Syndrome.  The doctors have never seen this before and aren’t sure how to proceed.  What should we do?”

I imagine, 34 years ago when my parents received my diagnosis, there was a similar sentiment.  “Umm, we’ve never seen this before.  This is the name for it, but we have never handled a case like this.”

Statistics seem to indicate that PS is as rare today in new births as it was 34 years ago, so it isn’t all too surprising that the next generation of doctors are equally stumped.

So that leaves us once again with the question of, “What do we (as parents) do?”

I think the answer to that will vary greatly from case to case.

In many cases, “Do nothing for now,” is perfectly acceptable.

In other cases, “We need to do surgery tomorrow to protect him/her,” may be the response.

Although I think the former will be more common than the latter.

In the next few posts I’ll try to address some of these questions.

I am not an expert on Poland Syndrome, I’m only an expert on my own experience.  So please please, if you have something to add to the conversation to help, comment below.  If you have personal experience on a certain issue, please comment.  There are parents out there looking for answers — you may have just the right information that will help them make a needed a decision.

There is an overarching question of, “What do I do,” in general.  For surgery decisions as well as for day to day life.  For that I first say, 1. take a deep breath, it will be okay, 2. no really, breath, 3. consider picking up a copy of Overcomer, just released as a paperback.