Monday, 14 May 2012

Poland Syndrome Awareness

I wanted to blog about our experience with Poland syndrome as we had such a difficult time getting diagnosed and finding someone who understood what was wrong with my son going back 11 years now when my eldest was born he was born early and he was happy and healthy.

One day when Thomas was a few months old I noticed that one side of his chest did not appear the same as the other there was a lump like a bone, I pointed this out to my health visitor and my GP and they said not to worry as he was growing this was becoming more noticeable so I asked to be referred to Alder Hey children's hospital we were seen by a doctor who sent us for an x-ray and he said some of Thomas's ribs were fused together and that was that some people are like that and it was nothing else, so off we went.

As Thomas grew his chest became more noticeable and 1 day whilst reading the paper I came across a story of a man who had just been diagnosed with Poland syndrome, I read more and was sure this was what my son had, I took him to the GP whom told me that Thomas did Not have Poland syndrome as his hands were fine, but  the older he got the more I knew that the muscle in his chest was missing and I was sure I was right ......But how do you go to your GP and say your wrong I'm right?

I eventually found an amazing support group here in the UK and spoke to someone I will be forever grateful to, a lady Lynn Farmer at www.pssgcharity.org/ she gave me so much information and support and put me in contact with a doctor who she knew could diagnose once and for all  by this stage my son was 8 years old.

We travelled to derby and the Doctor confirmed finally that my son did in fact have Poland syndrome, I was relieved to know that I was not just a manic mother but I was actually right all along.

After our visit to Derby, Thomas was seen in Alder Hey again this time by a fantastic Consultant whom was really interested in Poland Syndrome and he explained to us how rare it was and that this was the first time he had ever seen this, Thomas had to have a scan to make sure all his organs were in the correct place and thankfully they were although we were told it was a really interesting scan and he has many ribs fused together, also a couple of muscles missing on one side, but another muscle compensates as he can still do monkey bars, swimming and everything else.

Thomas who is 11 now can have surgery if he ever decides he wants it but for now he is happy and does not  mind at all, that's our journey so far but for anyone that does not know what Poland Syndrome is I am adding more information.

What is Poland Syndrome ?


Poland's Syndrome is a pattern of one-sided malformations characterised by the
absence of the pectoralis major (chest) muscle and short, webbed fingers on the
same side of the body.  Poland's Syndrome can affect either side of the body but
occurs more often on the  right side.  The syndrome was named after Alfred
Poland, the person who first documented the abnormalities.  It has also been
called Poland Sequence, Poland Anomaly, and Poland Syndactyly.


How Do You Know If Your Child Has Poland's Syndrome?

Poland's Syndrome is evident  at birth.  The first distinguishing characteristic is
the absence of the pectoralis major muscle, the main chest muscle that normally
attaches to the breastbone.   Nearby chest muscles on the same side of body
may also be absent.  In girls, the breast on the same side is usually absent.  The
second characteristic of the syndrome is the hand malformation of shortened,
webbed fingers on the same side of the body as the absent chest muscle.  In
rare instances, more severe finger,  arm, kidney, or spine problems may be
present.

I am a member of The Poland Syndrome support group who can also be found on Facebook they are very supportive and full of great advice.

1 comment:

  1. Great post- will tweet it and add to our FysNet FB page - my family is also affected by PS. Today, DysNet has been launched, the new online network for limb differences. ome on over and join us to share your knowledge! http://www.dysnet.org
    tania

    ReplyDelete