News posted 22 January, 2024

One of the earliest survivors of a rare birth condition celebrates 70th

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The first baby ever successfully treated for oesophageal atresia at Royal Manchester Children’s Hospital recently celebrated his 70th birthday after a lifetime of achievements following his potentially life-saving surgery.

Graham Slater was born with the rare condition, which affects approximately 1 in 4000 newborns, where the oesophagus (food pipe) is not connected to the stomach, it means without surgical intervention, life is unsustainable. The Manchester Centre for Neonatal Surgery, run by teams from Royal Manchester Children’s Hospital and Saint Mary’s Hospital, currently treats babies from across the North West and in 2023 operated on 15 babies with the condition.

Graham has since gone on to live a healthy, happy life and has helped support children across the UK through his work as a trustee with TOFS, a charity that supports children with the condition, as well as with EAT, an international federation of support groups for people with the condition, of which Graham was a founder.

Graham is also a EURORDIS board member, a non-profit alliance of over 1000 rare disease patient organisations from 74 countries.

“When you’re born with a condition like this, you don’t know what normal is.” said Graham.

“I struggled in my early years, all my food was mashed up and I had to be careful with what I was eating as I got older. I remember early Christmas parties where the food was brought out and I’d be brought in egg sandwiches and jelly instead of what everybody else was having. I couldn’t eat sweets and lots of other foods that other kids would have.

“Fewer children survived with this condition back then compared to now, so I feel like one of the lucky ones. It’s one of those things though, when you don’t know any different you just get on with it. By my teens I’d largely forgotten about it, although I began to have respiratory problems in my twenties which are related to the condition and which I have been able to manage.

“I went on to have a career in the aerospace and IT industries as an IT director before taking early retirement when I decided I wanted to spend more time helping other people who’d had similar experiences to me.”

Graham and his colleagues in TOFS and EAT have also built relationship with medical professionals and researchers, and support worldwide research for the benefit of people with oesophageal atresia – some of which has taken place at Royal Manchester Children’s Hospital where he has worked with Mr Nick Lansdale to develop care pathways for other people with the condition, bringing his story full circle.

At the heart of his advocacy efforts is his goal to ensure that patients are provided with lifelong holistic care and support:

“Patients will always need some form of support, whether that’s through education on their condition or medical support from a hospital, because the truth is that symptoms can reappear. As a more senior survivor I’ve become aware that parents might look at me to see what the future of their child might look like. It’s why I feel so passionate about our groups championing what other people are doing, whatever their limitations, whatever their difficulties.”