Meningitis in your words

Ella Bailey's story

Location: England
Categories: Meningococcal
Age: Toddler 1-3
Relationship: Self
Outcome: Recovery with after effects
After effects: Amputations

I was 13 months old when I contracted meningococcal septicaemia in November 1998 so I’ve only heard stories about how it happened, how long I was in intensive care for and how amazing all the staff were who helped me. I have seen lots of pictures of me in hospital beds with lots of bandages and tubes!

To me, the after effects from meningitis have always been with me, which in a way is easier, as I have just got on with my life in the best way I possibly can.

"I can’t remember what my body was like previously and I have just grown up knowing my body as it is now",- says Ella.

As a result of contracting the disease I had amputations to my toes (only the big toes and a small stump on my left remain), loss of heel tissue, malalignment of my legs, in particular my growth plates in my left leg did not allow it to grow normally and as a consequence it grows bent, my top adult teeth didn’t form, resulting in my need for a denture until I can have implants, amputation to one of the tip of my fingers, there was also fasciotomies (a surgical procedure where the connective tissue fibers are cut to relieve tension or pressure commonly to treat the resulting loss of circulation to an area of tissue or muscle) to save my fingers so that I didn’t lose them.

I have scarring from both the disease, where my tissue went black from the blood poisoning, and the subsequent operations. Operations include osteotomies (x2), a Taylor Spatial frame to encourage my left leg to grow by 5cm and to realign my ankle, a staple for my knee, removal of growth plates from both legs, scar revision – including an operation to stop my right foot curving over, and most recently they broke my leg again and used a titanium bracket to hold it together (which still remains inside!) to again encourage straight growth, this is known as a CHAOS procedure.

Personally, I try not to let anything stop me from doing what I want to do. I have danced since the age of 3, I act, I sing, I play musical instruments, I used to swim.

"I am more confident now than I used to be because I’ve learnt that if people stare, you can just explain to them what has happened and suddenly they become very supportive and understanding. I think lack of knowledge is predominantly an issue."

For example I am very happy to wear shorts and flip flops (when I force them to stay on my feet!) and this does normally attract attention, but people seem to just stare and are too afraid or embarrassed to ask why. Young children especially often point and ask their parents questions, in response to this the adult normally scolds the child for pointing, but they don’t really know themselves what has happened and why my legs and feet aren’t the same as everyone else’s.

Meeting new people can be hard but again explanations of why I can’t walk too far in case any part of my leg plays up, or why I develop a limp over long distances seems to do the trick. Obviously as a teenager you don’t always want the sympathy vote but that’s just something I have been getting used to. I don’t like to say I have an abnormality because to me it is normal and I am completely fine with having to deal with any extra challenges my body sometimes throws at me.

Occasionally, after an operation when I have to relearn how to walk again, I am extremely dependent upon my family and I simply could not do it without them. Because of this I am very close to both my parents and trust them a great deal, which compared to many other ‘ordinary’ teenager-parent relationships is quite different! They are always supportive and proud of everything I do which makes me even more determined to ignore anything wrong with me and try to live an ordinary life.

Over the past year, I received partial silicon prosthetic feet for mainly cosmetic purposes – they allow me to wear shoes I would not normally be able to, and look like real feet! They are in time supposed to improve my walking too. These custom made prosthetics are made by Dorset Orthopaedic but I was lucky enough to receive NHS funding for them.

I feel the signs and symptoms of meningitis are quite well known nowadays. Obviously there will always be some lack of understanding and awareness, but even during my lifetime it has come on leaps and bounds. 16 years ago I think there was not enough awareness of the disease, and very few people were equipped to deal with it in the rapid manner that is necessary when an infant is rushed into an A and E department.

I think the mortality rate is still 1 in 10 but the figure was higher when I was a baby. I know my survival was lucky, but to come out with what I consider to be mere scrapes compared to some children who are destined for a wheelchair bound life after contracting any form of meningitis, is down to the expertise that was available and the swiftness in which the doctors and nurses acted. I haven’t had to have any leg amputations, or suffered any brain damage due to the disease. I truly am one of the lucky ones. (Cliché I know but I think this applies to my situation quite well!).

Meningitis Research Foundation have been an incredibly supportive organisation, particularly I think for my parents, I am now an ambassador for the charity which gives me a further insight into other children and adults who have suffered from the disease.

ELLA BAILEY
JANUARY 2015

Ella Bailey's story

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