Twin-to-Twin Transfusion Syndrome: Why I Am An Amputee
My name is James, and I’m a left leg below amputee – lost my leg in a shark attack a couple years ago – great white came out of no where and the rest is history. Just kidding! I lost my leg when I was 18 months old – my twin and I were born at 28 weeks (3 months premature). We developed a condition called twin-to-twin transfusion. This is where one twin feeds from the other. In our case I fed from my brother so I was overloaded with nutrients, oxygen and blood and Tom was deprived. As a result of this when we were born, Tom was born grey because he has such little blood and I was purple because I had too much. As I had so much blood, this led me to get blood clots in both my legs. I was also showing signs that my vital organs were failing.
Originally I was going to lose my right leg to my thigh and my left leg just above the knee. After treatment at Great Ormond Street I lost my left leg below the knee and thankfully managed to save my right leg. However, my right leg was left very severely damaged – no main artery, bad circulation so my foot is constantly cold, lost all fat and muscle tissue from knee down and as a result of this I find it very difficult to walk on hard surfaces without shoes on, foot is in a fixed position, corrective surgery on my toes twice and lost half of my big toe. Apart from that it’s a perfect leg!! I just want to put in perspective how ill me and my brother and how unlikely it is that were are both here today by breaking down the odds of all of the events happening.
Roughly 1.5% of babies that are born are twins, and only 20% of those are conceived identically (i.e. not through IVF). Out of those 20% only 5% of them are identical and 10% them have the condition that we had. If you’re unlucky enough to get TTTS (Twin-to-Twin Transfusion Syndrome) the chances of both twins surviving is only 10%. Also, there was a 20% chance of us developing Cerebral Palsy and a 15% chance of developing brain damage. If you add all this up, the odds that I am standing here with my brother today is 1 in 1,041,667. The doctors had never documented a case like ours before; they never thought we’d end up in a mainstream school, let alone University.
Challenges I've faced as an amputee
Throughout my life, I have had to face and overcome many challenges that have been put in front of me. For example, I have had over 30 operations, all with general anesthetic, due to several problems with my legs. I worked out that on average, each operation takes around 3 hours and 30 minutes. This means that I’ve been in surgery for 105 hours, which works out to be roughly 4 ½ days of my life, in which I’ve been under anesthetic. The main operation that I had was bone revision surgery. My bone grows faster than my actual leg, so if it is not trimmed, the bone would penetrate my skin. This would usually occur once a year. Luckily, I’ve stopped growing now, and no longer need to have this done. After these surgeries, I was not able to wear my prosthetic for up to 3 months, which meant that I had to be in a wheelchair or on crutches. On average, it took me 2 months to recover- 30 x 2 = 60 months. This means that for 5 years, a quarter of my life, I have been recovering from surgeries.
This did not just affect me physically, but it also affected me mentally. Trying to stay upbeat and positive with the many appointments was very tough. It was hard for me as I was growing up. Seeing all the other kids in the playground running around, playing football and doing what kids do. I couldn’t join in, but always tried to keep my head up and remember that I was going to get back out there, and that it was only a matter of time. I did have a lot of time off school, particularly when I was 15/16, when I was taking my GCSE’s. I was hitting puberty, and growing quite a lot. I think I had 2 operations in 14 months. From all the time off, I had really fallen behind and had to catch up. My attendance was at 68% in the first term of my GSCE’s. I was so determined to do well, that I worked my ass off leading up to the exams. I wanted it so badly. Not just because I wanted to do well, but in order to prove to myself that I am not going to let anything stop me from achieving what I want to achieve. Results day came around, and I remember opening up the envelope with my grades, looking at them, and just being so proud that I did it! I came out with 1 A+, 8 A’s and 3 B’s. That was a special day in my life. I think that if I hadn’t had to deal with all of these problems in my life, I wouldn’t be the person who I am today.
Accomplishments I've Experienced As An Amputee
Having a “disability” hasn’t really stopped me from doing anything. For the past 8 years, I have played in an all inclusive football team, and I love it. However, there aren’t many people that have physically disabilities – only people with mental disabilities (e.g. ADHD, autism and Asperger’s). I am the only one with a prosthetic leg. I don’t like to brag, but I am our top goal scorer too.
Despite my health problems, I’ve also done quite a few extreme sports. For example, skydiving (twice), white water rafting, canyoning and paragliding. I also went on this one trip that I really think changed my life. When I was 15, I went skiing in America for a week with 9 other people like me, who had disabilities. These people were also missing limbs too. Before I went, I was very self-conscious about my leg, I never really wore shorts, and when I played football, I used to pull my football socks all the way up so no one saw that I had a prosthetic leg, or that I was different.
I remember one Christmas when I was about 10 years old, I wrote a Christmas list. On that Christmas list, I didn’t write down that I wanted toys or anything that a kid my age would usually write. For me, I had one thing on that list, one thing that I felt everybody else had that I didn’t, one thing that wouldn’t make me feel so different anymore, and that one thing for me, was a leg. I wanted to always be able to run around with my friends, and not have all these doctor appointments, whether it was check ups or going down to Dorset to get my legs made. I wanted a normal life like a normal 10-year-old boy would have. However, that all changed after a week in America learning to sit ski. Being around the people who I was with, made me realize that there are other people out there just like me. It made me feel not so different after all. I remember after coming back, I got the courage to wear shorts, and I was walking down the street and there were people who would look and stare. I thought to myself, I never thought that I was that good looking! Having a “disability” really wasn’t so bad after all!
Perks As An Amputee
I get to start driving a year early when I’m 16. A scheme called motability, where you get a free car, free insurance, free tax, and no congestion charge! All I have to do is fill it up with fuel, even though it left me as the taxi for a year while all my friends were still learning how to drive. I get a blue badge, which means that I can park wherever I want for up to 3 hours, and I’ve only just learnt this, but if I take it into a cinema, I get a free carer ticket. Not too bad for dates eh? I also get to skip to the front of the queue at theme parks. Once someone told me I had to take my leg off because it counts as a “loose item,” and that didn’t go down very well. Life really isn’t all that bad!
Upcoming Surgery: osseointergration
Although, I have managed to cope and achieve the things that I have, I still am in a lot of pain. There is this new ground breaking surgery in Australia called ‘osseointergration,’ that could really change my life. The procedure is similar to a tooth implant, and involves removing the bone marrow in my leg, and inserting a metal implant into it. The metal would then come out of my own skin, which I would then screw the leg onto, acting like a permanent one. Having the surgery would mean no more sockets. This would then prevent sweating, neuromas (trapped nerves) and sores (all of which I suffer from). All of this would cut down on all the appointments I have. I have to drive down to Dorset Orthopedic which is a 200 mile round trip, and have been doing that since I was 18 months old. I think I’ve had around 70 appointments, which work out to me driving 140,000 miles for appointments, plus all of the ones I have to go to in London. This works out that I have driven over 150,000 miles in my life going to appointments. To put into perspective of how far this is, I could have gone around the Earth’s equator 6 times. I am only 20 years old. To get an idea of how life changing this is, a woman who was in a wheelchair for 10 years, as she couldn’t get a leg to fit her properly, had the procedure, and within 4 months after surgery, she was walking up and down the beach every day. For me, the most special thing about this is the fact that I will finally be able to stand up in the shower after 20 years. I don’t wear my prosthesis in the shower because it’s such a nightmare to change, so this is something that I cannot wait for. I have spent 20 years crawling in and out of the shower. The day I can walk in and walk out of the shower will be very special to me. However, in order to have the operation, I was told that I would have to have the procedure done to my right leg too, meaning that I would have to amputate it. This is because I’m in so much pain with it, and when it comes to rehab my right leg simply will not be strong enough to hold my weight. This has been one of the hardest decisions I’ve ever had to make in my life, but the positives to it all are so amazing. This would be something I may regret if I didn’t take the opportunity.
The surgery is very expensive. Originally, it was going to cost £90,000 for both legs to be done at the same time, but only recently have I found out I could only have one done at a time. The price of one is £68,000, which I would have to get done twice. I have been fundraising to raise the money. So far, I have reached just over £40,000 in the 8 months I’ve been doing it. I have used social media, and have been giving talks like this at schools. The flights are now booked. I’m flying to Australia on 26th May to have the surgery on 30th, so if I could raise the money by then it would be incredible. It’s not just for me though, part of the campaign I’m doing is really to help raise awareness for other amputees like me, who don’t even know the surgery exists as it has only been done on just over 1,000 people in the world. Also, the operation isn’t available on the NHS yet, so I’m trying to raise as much awareness as possible, so they can pick it up, and help other people. I’m donating 10% of all donations to GOSH, as I feel that without them, Tom and I wouldn’t be here.
Future Hopes For other amputees
Due to all my experiences in life, I have decided once I’ve had the surgery on both legs, I’m going to set up my own charity called AMP (anything made possible). I would like to help amputees who are in need of prosthetics, and help them put money towards buying them or even towards the operation I’m having. I was fortunate enough to get my legs funded the majority of the time, so if I can do this for the less fortunate, then I will. I just wanted to end my piece by saying that if you take one thing away from this, I would love it to be that no matter how hard life gets, or how unfair it seems, never stop being positive. Your head is the biggest asset you have, so if you can keep that strong and positive, you can do anything you set your mind to! I always think that if I’m having a bad day, it could always be worse. There is always someone worse off than you, so be grateful of what you do have. Doing these talks have really helped me gain confidence, and I really hope to inspire people. I love the quote “Don’t inspire people with what you do have, inspire them with what you don’t have. I hope I’ve done that today. Thank you.