When a child is born with any irregularity, one of the first questions of a medical specialist is if surgery is necessary, whether it be getting rid of a defect or assisting with it.
When I was born five weeks premature, my condition was noticed immediately. Prior to my birth, the midwife did not pick up on the difference during the ultrasound, so my parents and everybody else was unaware of a defect until my arrival.
Having been so tiny due to my premature arrival, I was taken and place in an incubator almost immediately with my parents being informed I had a ‘handicap.’ It wasn’t for two weeks until we were referred to hand specialist. Following x-rays and scans, the agreement came when I was six months old for my surgeon, Dr. Watson at Wythenshawe hospital, to perform the first of my surgeries under him – this one as an exploratory operation, which left a gnarly scar down the top of my right hand. It was also in this operation that saw the removal of my thumb, as it had no bones to support itself.
As the years went by, physiotherapy and x-rays were consistent as ever. The doctors and surgeons were wanting to keep a keen eye on the growth of my limb-difference. It seemed like the hospital was becoming a second home for me with how frequent I visited.
Seven years-of-age, mere weeks into my Illizarov Apparatus fitting. Mid-June, 2002.
As I hit the age of seven, Dr. Watson requested to see myself and my parents with the idea of trying out a new procedure, using an apparatus called the ‘Ilizarov Apparatus.’ The procedure involves an initial surgery in which the main bone is surgically broken in order to fit the circular frame around my hand.
Once fitted, it had to be given regular maintenance including adjustments at home for a period of four to six week, every day and night, before returning to my surgeon for a check up and surgical adjustments. A daily routine of this kept me out of school for the majority of the spring term to avoid accidents on school grounds. While the idea was obviously taken with consideration for my well-being, I did miss a lot of school due to it. Given that this time frame mostly surrounded my SATs exams, my studies did suffer and did struggle with some subjects due to far less educational hours.
Against the plans of Dr. Watson, my hand was not giving in to the structure after six weeks, forcing the apparatus to cause more damage, therefore leaving Dr. Watson with no choice but to remove the frame, replacing it with a plaster cast for the next six weeks and remainder of the summer holidays to support the small movement it had made.
I had the cast removed the following September and continued with regular check-ups and x-rays with Dr. Watson’s clinic, as well as regular physiotherapy.
After breaking my left arm in the summer of 2005, in which also led to missing school – this time, purely of my own fault! (Which you can read about here: http://www.disabilityisability.com/journal/best-toughest-summer-of-my-life).
The following summer when I was eleven years old, my parents and I attended another check-up with Dr. Watson where he proposed attempt to straighten my fingers to allow more movement via placement of a metal pin. At this time I had also started my final year of primary school which was important with the Year 6 SATS quickly approaching and, with a bid to get into a good high school, grades were important.
My parents were tentative towards allowing this procedure due to past failings and also acknowledged my feelings towards yet another operation. As I recall, I was growing tired of operations, missing school and parts of my childhood. I wanted to put the operations behind me, but after discussion, we decided to give this one last attempt.
We went ahead weeks later and had the pin placed in my hand, supported with a cast and sling. As aforementioned, more school time was missed right at the start of the new term. It seemed to be working and held in place for awhile. My hand felt straighter and fingers were more aligned than before.
The doctors were happy, my parents were happy and, most importantly, I was happy. This seemed like it was going to work. That summer just gone, however, my parents had bought me a new bike. I rode around on it all summer and into colder months with my brother and friends.
Then one day I was riding my bike when a car came out of a side street as I approached the crossing. I slammed on my right break with my hand very hard to come to a full stop. Ultimately, from breaking so hard, I didn’t realise it initially, but from the pressure and squeeze of the break, I had forced the pin to come out through my knuckle. Honestly, it was out a good two inches.
Running into the house shouting, “Mum! Dad! My pin’s come through my hand!” was not a sentence they were expecting to hear on quiet weekend, that’s for sure. We quickly contacted my surgeon and had me booked in for it to be removed as soon as possible.
Following the gritty removal of the pin, we returned to Dr. Watson’s office a week later to discuss what should be done next; more surgical attempts or to call it quits. After much discussion, myself and my parents were ready to leave it be. Dr. Watson personally asked me what I wanted to do me myself alone. I said I was happy to leave it and didn’t really want to face any further surgeries, especially as my teenage years were coming up and didn’t want to taint them with more unsuccessful surgeries.
Dr. Watson retired not long after and was very much an expert in this field. He was stricken by how stubborn my hand was, even going as far to say it was the most severe case of radial club hand he had ever seen (a notable accolade in of itself, I suppose!)
Coming to think of these surgeries – sure, none may have worked and I now might be in the same situation I was to begin with, but one must try, right? The topic of operations is one that always comes up when discussing limb-difference with parents.
It’s a tough topic to discuss, because parents are looking out for their kid with a difference the same way my parents were looking out for me with mine. Look, surgery isn’t always the answer as I found out for myself. For me, the more operations I had the more tiresome I grew and the more of a burden it felt as each attempt failed.
With that said, modern medicine has come along way since my last surgery twelve years ago. I’ve met many families whose child has had alterations made to give them a thumb or an extra inch of length in their hand that has been mindblowing to me and wasn’t really a thing a decade ago. Each person I’ve met with the same difference also has their own set of circumstances with it, too. Some easily fixable within one or two operations and some that are not so simple and may lead down treacherous waters.
I suppose a lot of it can come down to risk and reward. It’s a lot to ask of a child as a parent hoping for the best while having to put your kid through such a stressful and emotional time.
For me, in hindsight, I’m glad my operations didn’t work out. It was worth a try, but I feel I would’ve had to have a much more tentative approach to life with a pin or frame on my hand. After 23 years with my limb-difference, it’s what’s made me who I am today. I’ve spent that much time figuring it out. To be honest, I still am experimenting daily. I wouldn’t have it any other way, though. That’s the best part of a limb-difference. It sets you apart. It’s given me a different way of life. I love my difference.