My Story- The Beginning Part 1

I am going to do this in 2 parts because it is a very long story and I don't want to bore you guys with putting it all in the one post. Well this one has been a long time coming to be fair, I was awaiting on my baby pics in April time but then other things got in the way so I have never come back round to the subject of me.

It is a subject I find it a little difficult to talk about but things are extremely good at the moment and I feel I am in a good place to talk about it all.  Be aware I am writing this not for pity or for people to be negative. This is a subject that is extremely close to mine and my families heart and I don’t think its heard of as often as it should be. But please know I am no way a medical professional I am just writing  from experience. I will source some links and medical jargon for part 2.  Be prepared for tissues and baby pics…….

I am going to do this in 2 parts because it is a very long story and I don’t want to bore you guys with putting it all in the one post. Well this one has been a long time coming to be fair, I was awaiting on my baby pics in April time but then other things got in the way so I have never come back round to the subject of me. It is a subject I find it a little difficult to talk about but things are extremely good at the moment and I feel I am in a good place to talk about it all. Be aware I am writing this not for pity or for people to be negative. This is a subject that is extremely close to mine and my families heart and I don’t think its heard of as often as it should be. But please know I am no way a medical professional I am just writing  from experience. I will source some links and medical jargon for part 2.  Be prepared for tissues and baby pics…….

Okay so to begin back in 1985 when my mum was pregnant with me, my parents we’re made aware that when I was born there would be problems. At the time my parents did not know if I was a boy or girl as it was slightly different in the 80’s……anyway on the morning of July 12th 1985 I was born by C-Section and it was apparent there were issues, I was born with whats known as an Eptopic Bladder which meant I was born with my bladder on the outside and not where it should be inside my tummy. So at around 3hours old I was whipped away in an ambulance with my dad by my side from Shropshire to Alderhey Children’s Hospital in Liverpoool, where I would be back and fourth for various check ups and operations. So I was taken to theatre to perform an operation to place my bladder back inside and into the correct place.

Didn’t want to put in one of the pics as I was worried it was a little too much for people to see as it shows my bladder all wrapped up.

So I was in hospital and my parents were told my bladder was back in the correct position and as I got older it should grow as normal. I was back an fourth for check ups and scans etc from the time I was discharged to the age of 3 when sadly it was discovered my bladder just wasn’t growing in the way it should and I would eventually need a huge operation to fix this which for my mum and dad and all my family was pretty dam scary and also by the time I was 3/4 my mum was pregnant with my brother who was born without issue. When it came to the huge operation at the age of 6 and my brother being 2/3 it was an emotional time. My dad worked as a lorry driver and my mum had to come and stay with me, being away from everything we knew was dam hard.


The day I left hospital the nearly a month after I was born

Alderhey by this time was like a second home to me, my amazing consultant Mr Tony Rickwood (sadly no longer with us) well him and his amazing team were to perform an operation to reconstruct my bladder in a way. Bladder Extrophy I think is the medical term for the operation I had, but please don’t take that as gospel as I am not 100% on that. From what I know from my folks and what I remember from various doctors part of my bowel was used to help reconstruct a fully functioning bladder for me, from this I would have to do something called self cathetherisation for the rest of my life. The other option I believe was a bag, which wasn’t the option used, There were minor complications during recovery which extended my 3 week stay by an extra 3 weeks. I had tubes and bags whilst I recovered in hospital,but when I would eventually return home it would be different. 

Me age 1….


I recovered well in hospital giving the doctors and nurses the run around, having various visitors to give my mum a break but I do not fully remember all this as these days have become a haze (a distant memory). I was discharged from hospital my mum was given the training she needed to catheterise ,me as for a 6/7 year old it was an extremely daunting prospect. So over the next few years or my mum and Nan were both able to catheterise me and I had a teaching assistant/helper who was trained to help me out during my primary school years. I don’t remember what age I had reached but what I do know is I was adamant in refusing to do the catheterisation myself which was becoming an issue as I got older. I felt embarrassed but it was becoming too much for my family so I was taken back in to Alderhey to be trained myself to do what was needed in preparation to start secondary school. I was there a week and within the first few days I had mastered it myself…..

Ok so I will end this one here and get part 2 may be a while as there is still so much to cover on all this. And I need to get some more pics of when I was in hospital for my major operation. I hope you enjoy the read of this blog post and it doesn’t upset people.

Thank you for reading

Kayleigh x