Sunday, 16 October 2011

Living with Poland Syndrome

I myself had never heard of this condition so I best start at the beginning 10 years ago back in 2001 when my first son was born I noticed his chest seemed a little well lets say it looked like his ribs were out of shaped, every time I mentioned this to a medical professional I was made to feel like a paranoid first time mum, eventually after 2 years someone agreed to send him for an X-ray and we were told 2 of his ribs were fused together and not to worry, so off we went no more concerns.

As time went on my sons chest became more and more noticeable and I started to worry again as it seemed like a muscle was also missing, one evening me and my husband were watching TV and a programme was on and there it was  Poland Syndrome I was 99.9% sure,

Off we went to the GP and hospital and was told how rare this is and that because my son didn't have a hand defect it wouldn't be this, I then came across The Poland Syndrome support Group and was in touch with a lady called Lynn and she helped and supported me so much it was unbelievable we spoke for several months while I was trying to get a diagnosis for Thomas and decided enough was enough.

We decided to travel over 100 miles and pay private to see a Mr Bainbridge who has had lots of dealing with Poland Syndrome as soon as he looked at Thomas he confirmed that my thoughts were indeed correct and my son has Poland syndrome at this time I felt so angry with everyone who had made me out to be an erratic mother for nearly 10 years but happy that we now had a name for his chest.

Thomas has since seen many specialists at alder hey and they have checked that all his organs are in the correct place and I have been told that several ribs are fused which really angered me,
I guess this post is to raise awareness of Poland Syndrome and also raise awareness that Mums do know best after all.

Thomas's condition doesn't effect him in any other was other that his appearance and that doesn't really bother him and if it ever doesn't he can have surgery to change this but at the moment we are quite happy knowing that something can be done if and when he wants it done.

1 comment:

  1. Mums know best! Best we know it!