Your child is born with a malformed hand, doctors are completely puzzled.  “We have no idea,” they tell you, “we don’t know what caused this.”

At some point, either through your own research or after crossing paths with someone familiar with the condition, you hear for the first time the words Poland Syndrome.

You now know.  Now you have a diagnosis.  Something you can look up and look into.  But you are left with the question of, “Now what?”

Or maybe you hear the words Poland Syndrome before you even head home with your newest bundle of joy.  The what isn’t a mystery, but the now what very much is.

So, I ask again, now what?  What is the next step?  What are you supposed to do?  Do you need to take action on something immediately?  If so, what actions is that?

So many questions, so few answers…is that how you feel right now?

Let’s start with gratitude for knowing the what.  So many live many, many years before they ever have a name for their condition. You have a diagnosis which means you have a starting place.  There is some precident as to what comes next.

In just about ever case there is no urgency.  Poland Syndrome is not a fatal condition.  Barring additional medical issues, there is need for hurried action.  Take a deep breath.  Start asking lots of questions.  Start doing lots of research.  Ask more questions.  And consider all options and possibilities slowly.  Any decision you can make today can also be made a week from now or a month from now, and in many cases, a year from now.

Even if your child is no longer an infant, you still have time to think through the options and make an educated decision, not a rushed one.

There are two main surgeries to be considered, depending on the severity of the Poland Syndrome and how specifically your child is affected:  hand surgery and chest surgery.

We’ll consider each of those in the upcoming days.

(see previous post)