I was born in October 1940 and until very recently did not know the name of the condition (Poland Syndrome) I was born with. My sister on a recent bus journey picked up a copy of the Metro and read about Richard Stott. She kept the newspaper and sent me the copy. In my 80 years of life, I had never heard of Poland Syndrome. All of the medical professionals that I have met either did not know the name of the condition or did not see any need to tell me.
I am missing the pectoral muscle on my left side and at birth my left arm was shortened and the fingers were fused. My left arm is about six inches shorter than my right and I cannot supinate my left hand. I have nails on my thumb and pinkie but not on the other fingers
As a child I would refer to it as my “bad hand” and I would often try to keep my hand hidden to stop other children asking me what happened. Even now I will often put my hand in my pocket to keep it hidden if I am in strange company.
From about 1948 to 1950 I had a series of operations on my hand to separate the fingers. I was operated on by the paediatric surgeon Mr Andrew Laird in the Royal Hospital for Sick Children, Yorkhill, Glasgow. In the very first operation a hole was made between my thumb and index finger at the base of my thumb. To keep the wound clean a piece of gauze was inserted through the hole and this had to be (painfully) changed by my GP on more than one occasion. I also had to put my hand into salt water several times a day to help the wound heal. The next operation separated the fingers. Skin grafts were used on the exposed flesh. My memory of the remaining operations is a bit hazy but I think that my index and middle fingers were separated in one operation and the remaining fused fingers were separated in a single operation
When I was in the hospital recovering from the operations, I had daily injections of penicillin which was comparatively new only being introduced to the hospital in 1944. I remember the injections being painful and chose to have them in my buttock rather than my arm as that seemed the better option.
I was never offered reconstructive surgery for my chest – perhaps the operation had not been invented when I was a teenager
The biggest benefit I received from the operations was the separation of my thumb which enables me to be able to grip things with my left hand. This gives me a degree of dexterity with my left hand.
How hospitals for children were run then was very different from today. We were kept in cots although the sides were left down if we behaved ourselves. We wore white nightgowns and scarlet bed jackets and were kept in bed for at least two weeks post operation. We weren’t allowed to get out of bed to go to the toilet so we had to ask one of the nurses for a bed bottle or a bed pan. Being kept in bed for so long meant that we had difficulty walking when we were allowed up.
Visiting was confined to one hour on a Wednesday and Saturday afternoon. Siblings were not allowed to visit. I think this was to prevent them bringing infection into the hospital.
Each of the wards in Yorkhill had a veranda and on a nice sunny day, a very rare event, the cots were wheeled out onto the veranda. We were instructed not to get out from under the bed covers. If you were caught doing this and after several warnings the punishment was to be put in a sort of harness and tied to the cot sides like a very young baby.
As my time in hospital was shortly after the second world war had ended food rationing was still in existence and sweets were in very short supply. The highlight of the week was on Sundays when Sister Wilson came round the ward with a tin of Cadbury’s Roses and threw two sweets on to every child’s bed.
When my two daughters were being born I had an unspoken fear in my ignorance that Poland Syndrome might be hereditary. Similarly, I had the same fear before my two grandchildren were born. It is only now thanks to PIP-UK that I know these fears were groundless.
Throughout life I have tried not to let the disability hold me back and have had a career in scientific research. I have driven a manual car for the last 50 years and I have always played sport. I have played football, rugby, golf and squash at a not very high level at various times in my life. I still fly fish and go for a jog several times a week.
If the disability has held me back in life I have not been aware of it.