Poland Syndrome Support

Parent’s milestone in journey with Poland’s Syndrome

lucy

Over the summer, the day I have been waiting for since I discovered my beautiful son had Poland’s Syndrome finally arrived.  He was coming up to his fourth birthday and we were driving along one day to the grandparents, a journey we have made several hundred times over the years and as we turned the corner to their road and he said to me “Why is my hand smaller than the other”.

I have to say that I have played this moment over and over in my mind for years, but it still came as quite a shock and at a time I was least expecting it.  I wished my husband was there to offer some wise words; he is great at giving advice and especially at getting my son to take things on board.  However, I know with a 4 year old, the window of opportunity to talk about something is tiny, as they are always busy and moving onto the next thing.

So I took a big deep breath and did my best thinking on my feet and let him know that his hand is smaller because that is how he was born and its something called Poland’s syndrome, it makes you very special as there are not many people with Poland’s Syndrome.  I also let him know that he is perfect just the way he is and to never let him tell him any different.

I told him that his small hand won’t stop him doing anything he wants to do, luckily it was around the time of the Paralympics, so we talked about the athletes with Poland’s syndrome, like Kim Daybell, Kevin Paul and Matthew Silcocks and how it hasn’t stopped them achieving great things.

He has since asked some more questions about if his hand will grow and if it will catch up with the other one.  Heartbreaking questions, I don’t want to tell my son he is different to other kids, but I have answered each one honestly and always ended it with a positive. After all, Poland’s has never stopped him trying new things; he throws himself into physical activities like any giddy youngster would.  So although he has noticed there is a difference, it has not held him back and my husband and I are determined not to let it stop him doing anything he wants.

I would love to hear from other parents of children with Poland’s syndrome about how they handle these questions, and about anymore that I can prepare for,

please write a comment below.

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2 Responses to “Parent’s milestone in journey with Poland’s Syndrome”

  1. Joan Barlis says:

    I have a 15-year old daughter who has Poland Syndrome. We learned about her condition when she reached puberty at the age of 13, through the help of a friend doctor who works in Alabama.
    My daughter has no ribs 2-5, no major and minor muscles. Her hands have perfect symmetry and she can function quite well, except for episodes of chest pains and recurring pulmonary ailments. We are from the Philippines and unfortunately, there are no doctors who specialize in Poland syndrome here. We’re completely lost as to whether she should have surgery or not. But I’m very thankful to have found this support group for my daughter.

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