My Story

Hi, I’m Katie! I’ve decided to write this blog to share my story and journey. I will update this blog as regularly as possible with any issues I have faced from both a mental health point of view and a physical health point of view. There will be some highs but also there will be some lows, but that’s life ay?

I also want to communicate the message to other people in the same or similar boat, that none of us are alone. There’s thousands of people with invisible illnesses (which my illness is) who suffer in silence most of the time, and I want to try and change that.

Okay so, here’s my story. (It’s probably going to be quite a long post- I apologise in advance!)

I was born with a condition called Exomphalos Major, 21 years ago in the month of June. My mum found out about my Exomphalos at her 16 weeks scan. (Things were a bit different then, now it could be found out at the 12 week scan). For those who don’t know what Exomphalos is – basically it means that the majority of my digestive organs (Stomach, bowel, liver, intestines etc.) was formed on the outside of my body instead of inside. I was born naturally and was under Lewisham Hospital (now known as University Hospital Lewisham) at the time. I had 7 operations to put everything back to where it should be, or at least roughly where it should be, over 6 months. (My dad says I was born on the hottest day of the year and come out of hospital on the coldest day of the year :))

The majority of the time over the 6 months, I had Clingfilm-like material over my organs that were on the outside of my body, to keep them protected, and start pulling them into my body.
I spent a lot time in intensive care and had so many lines and tubes. I also had a bulldog clip and a biro pen (yes you heard that right!- didn’t have a lot of the great technology they have now) on top of the Clingfilm that was covering my organs. The doctors used this to very slowly push the organs back into my body.
How? Well they turned the pen a little each day, which ever so slightly tightened the Clingfilm.
I was fed via TPN for some time (a very special feed that goes into my vein) as I could not consume anything.
I was still quite small, even though they say I had a healthy baby weight.
Mum and Dad lived in Maidstone at the time, and so travelling from Maidstone to Lewisham in London was a challenge. However they did not care about that, and always made sure they were there.
Also, just a little story to share with you, in intensive care, I had a breathing tube down to breathe for me, but me being me managed to move it once so that it was in the wrong place (not a dangerous place luckily). Some how, I had disconnected myself from it and started breathing on my own without the need for a machine. I did that myself. You just can’t get the staff these days. Haha!

I started to get stronger by the day. This meant I could be home for Christmas, and it was quite a happy time for the family. My mum and dad had to persuade the hospital a little bit to let me come home for Christmas, as obviously, 6 months on I was still small and delicate.
Luckily they allowed it, and I came home. I had to have a community nurse from our local hospital come round every so often to make sure I was having the right feed, and to change my dressing on my stomach.
Things were looking much more on the upside at this time, as the previous six months, I was on blood transfusions, tubes to breath, feeding tubes to help me gain weight etc. And now I was at home, just having my dressing changed every so often, and being monitored all the time.
I had very regular hospital visits for check-ups and things at our local hospital at the time as well.
Mum and Dad knew this would be a regular thing through out my life. And I think its because of this, that when I go to hospital, it seems a bit normal and I’m not really scared or anything as I’m used to the hospital environment.
I would say, even though I had a lot going on, I was quite a happy and strong baby. Every time someone wanted to take a picture of me I would look up at the camera and smile instantly. Don’t know why, I think I just loved having my picture taken haha.
Anyway, so things were quite okay from then on for a while. I was gaining weight very slowly but surely. And after 3 years, in the year 2000 we moved to our new home in Medway.

Since then, I’ve had numerous hospital visits both as an inpatient and outpatient. I’ve had many complications resulting in more operations, procedures etc. I’ll probably go through them over the course of this blog. There’s a lot to say and I’d rather spread it out over a few blogs rather than mention it all in one.

Don’t worry though – its not all going to be gloomy medical stuff – there’s a lot of lighthearted content I want to share with you too! My life practically evolves around humour – it’s been the one thing that’s helped keep me going!

Also, I love a good quote, so at the end of every blog post, I will share an interesting or humorous quote with you all. Hopefully it will brighten your day, just a bit at least.

Life is either a daring adventure or nothing at all. — Helen Keller



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