Shaun’s OA/TOF story

Shaun shares his story of being an adult born with OA/TOF.

Video transcription:

Hello, I’m Sean and I was born with OA/TOF.

I was born with a tracheo-oesophageal fistula. This means I had a connection from my oesophagus to my trachea instead of down into my stomach. So every time I was fed the food, or the milk in this case, would go straight into my lungs instead of down into my stomach. A repair was attempted in the first few hours however that was unsuccessful.

A second attempt was tried.

Again that was unsuccessful. It split. So the decision was made to perform a gastric transposition. My stomach was brought up to meet the part of the oesophagus I had. Which left me with a small pouch just behind my right shoulder blade. This obviously makes dieting slightly difficult – having such a small stomach.

It also leads to something called dumping syndrome. So if I do eat a large portion, instead of it sitting in the stomach and digesting as it normally would, it goes straight through down into the bowels. Which causes immense cramping, diarrhoea, and it’s just not very comfortable. I would manage this with Imodium to help slow the system down and Buscopan to help with the cramps.

I also have some of the VACTERL symptoms. I have a slight curvature on my spine. I was born with something called an imperforate anus. So I was born with it closed where, obviously, the opening would be. And I was also born with a few bladder issues. So, if I am correct on this one, the connection between my bladder and the urethra wasn’t there.

That was repaired in the early hours, at any early stages of my life. However, the nerves at the base of my spine are tangled in a way that the muscles in that area don’t work correctly. So with the bladder issues and imperforate anus linked with the spine issues it meant I would be incontinent. In the early years of my life in primary school I would still be in a nappy. Which as you can imagine was quite difficult.

So at the age of seven I was given the choice to have a colostomy and a mitrofanoff. A mitrofanoff is basically a small stoma on the abdomen which you can pass a catheter through to empty the bladder. That improved my life however, I think at such a young age accepting a decision as big as that took a long time especially during secondary school. It was it was challenging. I would keep it a secret. Luckily, I could hide it. It’s not very obvious.

However, as I’ve got older. I think having friends and family who I can talk to and are accepting about it has helped as well as finding other people like myself through the TOFS charity, the Facebook page, and going to the conferences. That has opened my mind in a way that has allowed me to learn to accept who I am and means I can be open about it. Which is fantastic.

I think all I would say to anyone who’s in a similar situation to myself with OA/TOF or the other symptoms, is that life can be a bit challenging. However, it doesn’t stop you from being able to do what you want to do. I know I have and anyone can.

So, I would like to say thank you and goodbye.