Poland Sydrome

I was born with Poland Syndrome.

A birth defect that occurs in 1 out of 20,000 newborns, Poland Syndrome is characterized by an underdeveloped chest due to missing pectoral muscles.  It is not a genetic mutation that can be inherited but, the exact cause is still unknown.  Twice as common in males than females, sometimes it can be associated with webbed fingers/ toes and normally affects the right side of the chest.  As a female I was born without the webbing and with the abnormality on the left side.

When I was 11 I went through an operation where part of my latissimus muscle was relocated to my chest so it could adapt and take on the responsibility of the pectoral muscle I was lacking (the body’s resilience is incredible). I was left with physical reminders of my emotional pain.  Over time my scars have become an important part of who I am and I wear them proudly.

From the beginning through the ending phases (age 8 - 16) my time in doctors offices was spent completely topless with everyone in the room a staring at my chest either trying to figure out “what was wrong” or determine “how to fix” it.  I am not sure I made it through a single appointment with dry eyes.

Unsure if I would be able to retain regular mobility, the idea of becoming strong was not even considered.  At the time the internet’s usage of forums for open dialogue was obscure.  My mom, desperate to find a connection for me and for her, did research but was unable to find an online community for others who were living with Poland Syndrome.

I was left to cope with it on my own and I did so by pretending it didn’t exist.  As you can imagine, that technique had some repercussions.

Fear of exposure and being a victim of circumstance are the major themes that I have unconsciously built defense mechanisms for.

Despite being years beyond the point of daily concern it wasn’t until recently that I have realized I am still operating on these protection programs.

I am liberating my shame by sharing my experience. I want to be the person my younger self needed to see.