Issy Simpson (12) in Leicestershire was diagnosed with scoliosis in 2018. However, with her determination and positive mindset, Issy still wants to run the London marathon one day!
Issy and her mother Rachel tells OSN their story....
"It all began in April 2018" Rachel tells us. "Issy was getting changed into her pyjamas and I looked and thought to myself 'that doesn't look right' so I turned around to her dad Chris and said 'that doesn't look right does it, Issy's shoulder blade is sticking out, what do you think that is?' Chris agreed and said it didn't look right, so of course the first thing I did was look on doctor Google and typed in 'sticking out shoulder blade' and the first thing that came up was scoliosis. I continued to read on and it became apparent that there was a quick test you can do called an Adam's Forward Bend Test which entailed Issy bending forward and touching her toes. Straight away I could see the right side of her ribs protruding out and kind of a hump there. I couldn't believe I had never noticed it before" Rachel continued to say. "I knew straight away at that point, Issy had scoliosis."
Issy attended her GP the following week "Instantly the doctor started to examine her and I remember thinking to myself 'how on earth did I not see this before?' Rachel explained. "Issy is a very keen swimmer and we had noticed at times she looked a little awkward walking pool side, however, we just thought that was because Issy was tall but I guess looking back now, there was more to it than that. I felt so awful not spotting it before hand, however, the doctor told me not to because growth spurts can bring on the onset of scoliosis so I wasn't to know." That day Issy's GP confirmed it was scoliosis. "I remember it was the time of Britain's Got Talent ." Issy recalled. "I remember seeing the dancer on there that had scoliosis and I got upset because I just didn't want it to be that bad. The doctor tried to reassure me but the reality was, it was that bad."
Issy was referred to the Leicester Royal Hospital where they conducted X rays in May 2018 to get a clearer picture of what was going on with her spine. Straight away the family could see the c curve in Issy's spine, however, it needed official diagnostics by medical professionals. Due to ever increasing timescales at the Royal, the family managed to get seen by a consultant at Coventry Walsgrave hospital in August 2018, where they completed yet another X ray. "When we spoke to Issy's GP back in May, he told us her spine had a 42degree cobb angle, so we already knew that when a spine goes above a 40degree angle, Issy was headed into the surgery bracket." Rachel said. "When she had the X ray at Coventry, her spine increased to a 52degree cobb angle so even in the space of those few months there was a 10degree difference. I couldn't believe how aggressive her curve was growing."
Issy has adolescent idiopathic scoliosis which is an abnormal curvature of the spine that appears in late childhood. Instead of growing straight, the spine develops a side-to-side curvature, usually in an elongated "S" or "C" shape; the bones of the spine are also slightly twisted or rotated. This meant she definitely had to go in for surgery. Issy was referred to Birmingham National Orthopaedic Hospital, however in the meantime, a strange twist of fate took place. "A really weird thing happened." Rachel explained. "My best friend was interviewing for a job and a guy came in for the role that was advertised and he had details on his CV about a charity he had set up. It turns out this charity was for his daughter that has scoliosis. Of course the conversation got on to Issy and this guy spoke about VBT (Vertebral Body Tethering) surgery that his daughter had been through. He suggested his wife Lesley's number could be passed on for any questions that I had. Lesley became my scoliosis angel. It was fate, that guy was meant to be there. He didn't even get the job!"
Lesley suggested a hospital in America called Shriners, that specialises in pediatric care. "America seemed the most crazy thing to do" Rachel said. "It's hard enough to get your head around surgery but to take your child to America is a massive thing. We wanted to opt for VBT as it leaves Issy with full flexibility in her spine but there are no guarantees it will work and she could eventually still need spinal fusion." Issy needed a consultant in the UK to oversee the transition from the UK to America. They chose Mr Gibson at Stanmore RNOH who looked after Issy before she went overseas.
During this time Issy had just gone into year 7, which meant she was having to deal with the pressure of attending a new school, finding new class mates and trying to get use to a very different life from primary school. "At first I started to notice my clothes wouldn't fit properly." Issy said. "I had to change my wardrobe because nothing would fit. Then came the pain. I felt okay initially although I could see my curve was getting worse. The pain became that bad I had to take a special cushion to school because I couldn't sit properly. People kept on asking why I had this cushion so I had to keep explaining my condition. Because I had just started this school and I didn't know them and they didn't know me. I didn't want to be just known as the girl that has scoliosis. I wanted them to get to know me first rather than just be defined by my condition. I was worried that when they saw my back they would think there was something wrong with me. I would rather them just ask me rather than just making things up that aren't true" As Issy's condition got worse, she had to start sitting out of PE and just spectate. Although Issy really enjoyed swimming and used to go three times a week, by December she needed to stop going because the pain became unbearable.
November 2018 arrived, Issy and her dad Chris left Heathrow to fly to America for her initial pre op and to see if the surgeon would take her on as a suitable candidate for VBT. Mum Rachel stayed at home to look after daughter Olivia while she anxiously awaited some good news. After a full day of X rays and tests, Issy got the news she wanted, the hospital could accept her for the surgery! At the time the hospital gave an indication the surgery would be within 4-6 months, however, in December 2018 Rachel got an email to say Issy's surgery date had been brought forward to 30th January 2019. A day before Issy's 12th birthday, she had to travel to London for an MRI scan which was then sent to the USA in preparation for her surgery.
"The surgery included the need for screws down her vertebrae which the surgeons then attach a flexible cord and apply tension so as Issy grows its going to keep pulling her spine straighter. With Issy being so sporty she needed that flexibility" Rachel explained. "They aim for a curve correction around the high 20degrees cobb angle but she could live quite happily with a high 30degree cobb angle." During the surgery Issy also had planned to have her ribs trimmed due to her rib hump being quite large. "Because I had nothing to compare the pain to, I wouldn't be able to tell if it was my ribs or my back hurting so I thought I may as well get it all done in one go." Issy said. "I didn't want to have the worry of having to go back when I'm older to get it done."
As the countdown continued, it was imperative Issy stayed healthy. "We flew on the Friday and we had to wear medical masks to make sure I didn't pick up any germs" Issy said. Before she knew it, the day of surgery was just around the corner. After spending a few days in America with family and friends, Issy was getting ready for surgery on the morning of 30th January 2019. Although very nervous, Issy was helped by the doctors and nurses by keeping her calm and her Mum giving her a box of a few home comforts. "I was really excited about being in America." Issy told us. "So I tried to use that excitement to get me through. I tried to keep positive and people kept on telling me that things will be okay and it will be worth it in the long run so I used that as best as I could but it was hard at times."
After talking to Issy and Rachel, it is apparent the hospital really helped in keeping families and patients at ease by tailoring it to children. The facilities they had there and how welcoming staff were to the Simpson family was really great to hear. The food sounded delicious too!
At the time of the operation, Issy had got to a stage of a 78degree cobb angle, however, after being in surgery for 4 hours, it went really well. Issy woke up in intensive care and the doctors showed her a 'before and after' image of her spine. Success! Issy needed to go to physio so they could show her and her family techniques for what was once a simple thing like getting in and out of bed. That was one of the most difficult things for Issy as she couldn't sleep. She likes to lie on her side but now she needed to sleep on her back. She also needed to learn to start walking again. She was tasked to complete laps around the ward and she tried to complete more and more as the hours ticked by.
After 5 days of determination to get better and positivity from Issy, she was allowed to leave hospital, however, needed to stay in the USA for another couple of weeks. She was signed out from hospital on Monday 4th February 2019 with breathing apparatus tasks she needed to complete every hour for the next 6 weeks. Two days later on Wednesday 6th February 2019, Issy needed to return to hospital to have a cast made for a brace that she needed to wear. She needs to keep this on for 12 months.
As Issy's recovery continued, she tried to challenge herself more and more and tried to complete different tasks without her surgery getting in the way. One such challenge was walking on a rope bridge over a shark tank! Normal day to day activities could be hard for her, especially the likes of public transport when it's bumpy.
After talking to Issy about her surgery and how she has coped afterwards, she admits it has been tough at times but she always comes back to the positive elements of her story. Even the memories of her time in the USA, she doesn't concentrate on the pain she went through or the discomfort, she tells us stories about the great time she had. Like visiting Ellen Stardust Diner which was one of her particualr highlights.
When returning back to the UK on the 22nd February, Issy had to stay off school for another couple of weeks while she recovered further. After this time had past, she had a phased return back to school. "I had to use the lift in school most days and leave class 5 minutes early so I didn't get pushed into in the corridor" Issy tells us. "It was hard because friends could go out and I couldn't. Also because I missed out on so much school time, friendship groups had moved on and people knew each other better than I did."
Talking to Issy on how her recovery is to date, things are going really well! She has gone from a 78degree cobb angle to 40degree, she is now back playing netball and most PE. She has also recently done really well in a bleep test. "I am really happy and surprised with how I did on my bleep test." Issy said. "It is the little things like that make me feel normal again. I couldn't do that a while back but now I can. If I didn't have to wear this brace it wouldn't have felt like I went through major surgery now. It is just the brace that is a constant reminder."
Moving forward, Issy has to have a check up and X rays on her progress in London every 3 months and in the USA every year for the next four years. Despite this Issy remains upbeat. "It is always important to try and find the positives even if it is a negative experience. I think it makes it so much easier if you have a positive mindset and not just always thinking about the bad side of things because if you are always worrying and concentrating on the negative things, it will make the experience worse. If you are thinking about the positive and the good things that are happening, it will make things easier."
Very well said Issy! OSN wishes you the very best in life! We have absolutely no doubt you will carry on with your positive mindset and go from strength to strength.
We would like to thank both Issy and Rachel for sharing their story.