An interview with Tom Flood, 90-year-old with bladder exstrophy

Interview by Katy Hargraves; Written by Pamela Artigas

We recently had the rare opportunity to get some words of wisdom from Australian, Tom Flood, a 90 year old with exstrophy. He possibly holds the world record for the longest living individual with exstrophy!

Tom was born in 1930 with bladder exstrophy. In those days, very little was known about the condition and no treatment options were available. His parents were told that Tom was not expected to survive and if he was not in pain, just to leave things as are. But Tom had other plans!

With wonderful support from his mother, Tom was brought up as “normal”. At the age of five he attended the local school and Sunday school. At school Tom says he was not allowed to drink too much water which was hard in the hot summer heat. Every day Tom would have to go home to have the “dressings” of cotton wool and towels changed when he was wet. Even though Tom wore a towel, safety pins, and cotton wool under a thick pair of pants, he recalls this as being very uncomfortable and smelly and said smelling all the time was the hardest. But nothing stopped Tom! He loved school and was involved in many activities such as playing tennis, riding his bike, camping trips, and swimming in the surf. 

Tom became a Sunday School Superintendent as well as holding other full-time jobs. A major turning point in his life is when he met Kate, a Sunday School Teacher, and they fell in love. Despite opposition from Tom’s family, they married in 1966 and she is his partner and the love of his life to this day! 

At the age of 55 Tom decided to have a urinary diversion which would finally allow his urine to drain into a bag. Tom remembers, “The morning after the surgery I awoke to the sight of a bag full of urine right beside my bed. Had I not been tethered to that bed with an assortment of drips, tubes etc. I would have jumped for joy and shouted, ’It‘s in the bag!‘ I felt so liberated and just could not wait to try this new life out!”

When asked what it was like to live with bladder exstrophy for 90 years, Tom replied, “Don’t let it control you. You control it! You are in charge!” Tom had to learn to live with his condition and handle difficult situations. But he told us, “There is not much I would change. I grew up with loving parents and three older sisters and my local doctor took great care of me. No one talked about my condition; they just got on with it.” 

In 2010, Tom was the first person to receive the Courage to Shine Award, and raising awareness about bladder exstrophy around the world is very important to him. He also loved working for and serving as President of the Ostomy New South Wales Association helping others get stoma equipment free of charge, commuting via a 2-hour train ride several days a week until the age of 87. 

Today Tom spends his days at home with his wife (they never had children) in his sunroom overlooking the lake. At 90, he is still going strong and loves bringing support and reassurance to those affected by bladder exstrophy. Tom was never daunted by the many obstacles put in front of him and will “KEEP ON KEEPING ON!”