We’re absolutely delighted to feature Katie Holmes’s blog. Katie is 13 and was born with Cerebral Palsy. She writes an inspirational blog on Instagram about living with Cerebral Palsy. Over to you Katie…
So things have been going well since the whole… incident… but we aren’t going to talk about THAT today, we are going to talk about something that has really changed my life something that is really important and that I think will reach out to a lot of people on my Instagram … my SDR surgery.
Firstly a bit about me…Obviously I don’t remember any of this and sometimes when my mum tells me I do think WOW was that really me, I was born at 28 weeks weighing 1lb 5oz, I was tiny!!! One of the most common causes of CP is prematurity, I was born with a bleed on the brain which is what caused my Cerebral Palsy. Certain parts of the premature brain are vulnerable to damage, particularly the parts which control leg movement and co-ordination. This leads to excessive stiffness or spasticity in the leg muscles and it affected my ability to learn to walk. I didn’t start walking till I was 4/5. Spasticity also causes pain, and, over time, shortening of muscles and tendons, joint contractures and bone deformities. Spastic diplegia (which affects the leg muscles more than the arms) is the most commonly occurring type of cerebral palsy. (This is what kind of CP I have). Nerve fibres running from the muscles back to the spinal cord play a major role in maintaining this muscle stiffness. SDR, by dividing some of these fibres, is very effective at reducing stiffness and spasticity. Pretty amazing right even I don’t understand half of them words lol.
So rewind back to when I was a young child, I used to walk very very high on my tip toes like a ballerina dances but I walked like that constantly, my mum had to do stretches every day but it still never got rid of the stiffness and tightness, obviously I didn’t know any different it was just the way I learnt how to walk, my mum remembers asking my physio if there is any surgery I could have to help me walk and the physio said NO….. but to be fair SDR (selective dorsal rhizotomy) wasn’t really that well known in England. Then my mum met a woman who had a daughter called Darcey who had this surgery in America which helped her walk, it was called SDR, my mum did so much research about and she can only recall it being done in America, she says she thought to herself how the hell am I going to raise over £50,000, she would go on the internet and go on forums and speak to so many different people and then after a few months she found out it was done in England in Bristol so we got a referral to Bristol it was 4 hours away from where we lived and they agreed that I would benefit from it and we got the go ahead for me to have the surgery there. My mum would still go on these Facebook groups and chat to people and she came across a lady whose son had SDR in Leeds well this place was only 45 minutes from our house and because at the time I had a brother and a sister, Leeds would be so much easier so again my mum went to the doctors for a referral and Leeds said that we needed to have a X-ray but the doctors refused to send us for one….so my mum got in contact with the local MP and explained everything about SDR and all about me and my condition and all of a sudden we got an X-ray!!!! Even I think that’s pretty cool….
So we went to Leeds to see the doctor there who performs the surgery Dr Gooden he actually went over to America to train with Dr Park (who some of you already know) and Dr Gooden agreed that I am a good candidate for SDR, they just have to apply for the funding….But it turns out the NHS was stopping the funding for SDR, Dr Gooden applied in April and in May the NHS stopped the funding so Dr Gooden obviously wanted to know because it had changed even though they had already agreed to the funding could I still have the surgery????? YES I COULD!!!!!! I was the last person on the NHS to have SDR…wow can you believe it, why on earth would they stop funding for a surgery that helps children walk I don’t know…..
I remember going to Leeds I had to stay there for a month with my mum whilst my dad was with Lincoln and Emily, I will always remember the first time getting wheeled into the operating room; it was something I had never experienced before in my life! I will be totally honest I was petrified and every surgery I have ever had it’s still very scary to be put asleep, probably just as scary for my mum and dad, they have to sit and wait about whilst I’m having a major surgery. But is it totally worth it? YES!!! Let me tell you why it’s worth it…. Dr Gooden has to cut a nerve in my spine that was connected from my brain to my legs the part of my brain that got damaged when I was born affected this nerve, so cutting it released the tightness in my legs, which overtime brought my heels down so I wasn’t walking on my tip toes anymore, the surgery took about 5-6 hours obviously I don’t remember anything but my mum and dad said it was the longest 6 hours of their life….I was in bed for about 4 days until they started getting me up and about, to be honest it was pretty scary because I couldn’t do any standing up for 4 whole days, I was only able to lie on my back….luckily I don’t remember any of the pain THANK GOD but I can imagine it to be like the pain I had in my other surgeries. I remember all the physiotherapy I had to do and boy was that intense, I also had to go to the hospital school because I was in there for so long, I never got bored because there is some amazing staff who keep you busy with painting and drawing and watch DVDs, I also remember a little girl who was next to me besides my hospital bed who played tea parties with the nurses and me, (I was 7) and every night she would say ” Katie, I really want my mummy, where is mummy?” and I would always say ” She will be coming back soon!” I even stayed up with her late when she cried until she was alright because I felt really bad for her, my mum stayed at the hospital with me but in a building across the road from the hospital called Eckersley House, so she stayed with me the whole month my dad would come and visit every weekend. I even had some family come and visit me my Grandad came and Auntie Georgina and also my Godmother Roxanne came, I also got some sweets sent to my bed from my mum’s friend Heather AND yes I shared them with all the other kids.
It’s quite a big thing apparently to be the last person on the NHS to have SDR, a reporter from Granada Reports on TV actually went over to America and did a story about SDR and my mum thought why not get it out there that the NHS are stopping this funding so she emailed a few newspapers and got in touch with our local news and they wanted to do a story on ME!!!!!! Little old me!!!!! If you want to see my pretty face on the news here it is, excuse the no front teeth LOL .
I was Dr Gooden’s 9th child to have SDR… I still feel lucky to have it in the NHS to this very day! I would have done A LOT of fundraising to have my SDR operation… It would have taken me thousands of miles to America! Honestly…. all the way to America for one operation? I feel like that is so wrong! It would have been so hard for us all to do all that fundraising and travel that way, Luckily now everything has changed you are allowed to have it on the NHS again now but only if they think you’re a good candidate, I just want to say to all the doctors and nurses (If your reading this or not) thank you all SO MUCH!!! I wouldn’t be the way I am today if it wasn’t for you! My advice to anyone having SDR surgery (or any type of surgery really!) It’s going to be alright in the end, it might be and feel scary but it really improves! Some people on my Instagram who follow me are getting ready for SDR surgery and I hope they read this and think “I can fight through this like the warrior I am!” I really hope it makes you feel better about it! I’ve actually just had my 6 year check-up in Leeds with Dr Gooden and he can’t believe how well I am doing I think he’s done over 100 children now which is amazing!!! All them children’s lives he’s changed……we have such amazing doctors and nurses. Also a lot of people are worried about scars don’t be…be proud of them it’s made them who you are below is a picture of mine at first it looked worst but now you can hardly see it.
Any questions or anything feel free to message on my Instagram katieholmesblog13 or on my blog. My parents made a little video of my life up until I had SDR here is the link it shows videos of how I walked before and after hope you enjoy it…