Spinda Bifida
Roy Youth Worker

Meet Roy! Roy is one of our passionate staff members. Each day Roy makes a difference to the lives of many of our clients.

Roy has overcome a great deal of challenges throughout his life and has an incredible outlook on life. He continues to spread optimism and hope to anyone who has the pleasure of meeting. This is his story, thank you for sharing Roy.

Roy’s Story

I was born in Melbourne at the Mercy Maternity Hospital, at 11:30pm on 4 November 1971.  My father who had been with my mother during my birth was told ‘you have a strong and healthy son’ and to add to his joy I was born on his Father’s birthday. I was then named Roy William, after my two Grandfathers.

It was not until they cleaned me up after my birth that they found the sac on my back.  I was to be the first baby born with Spina Bifida in that hospital. The doctor who delivered me then had to do some fast research about my condition. He then informed my mother of the prognosis. He told my mother that they needed to remove the Sac on my back as soon as possible, and it was urgent that they contact my father, who had already gone home for permission to perform the operation, as my mother was under sedation still, and not legally able to sign the transfer and permission papers required.

As Dad had gone home to celebrate with his father, and was not contactable by phone, it was necessary for them to send out the police to bring him back to the hospital. What a shock to him.

I was then transferred to the Royal Children’s Hospital in Melbourne when I was less than one day old for my first of many operations.  The first was to remove the sac on my back and then repair around it as much as possible. This left me with quite a huge indented scar in the middle of my back.

About a week later I was operated on again to insert a shunt, which was to drain the spinal fluid which normally runs from the brain down the spinal cord. Without this shunt and because of the break in the spine, the spinal fluid would have stayed in the brain area and would have caused Hydrocephalus, one of the side-effects of Spina Bifida.

I was then allowed home for the first time on 8 December 1971, but for Mum and I, there was to be many trips back to the Children’s Hospital to access the performance of the shunt, and also to determine the amount of disability I would have.

On 8 January 1972 the upper end of the shunt blocked, and this was repaired.  On 16 May 1973 a routine lengthening of the lower end of the shunt was performed.  On 25 May, 1973 I had another operation, this time on my hips to correct an external rotation.  On 25 December 1973 the shunt blocked again and another repair was performed.  Then in June 1975 I had another operation on my Achilles tendons, to lengthen them.  The doctors decided that I should be put into a brace from the chest down and callipers placed on my legs, as they told Mum and Dad that I would probably never crawl or walk.

In 1976 the family decided to move to Townsville, as we had more family there, and life would be less stressful for my parents having the extra support in which I would need.

My medical records were transferred to Townsville General Hospital, and my parents enrolled me in the North Queensland Crippled Children’s Home for a few years, until the Education Department reassessed my needs and decided to have me moved into a more normal school environment.

So I started school at the Aitkenvale Special School, as there was no remedial teaching in the normal schools back then. So I completed all my education at the Aitkenvale Special School.

It was on the 24th of February 1981 that I was to meet Dr Rossato for the first time, when I was rushed to the Townsville Hospital with a faulty shunt. He operated on me and repaired the problem.  We met again on the 4th of March 1982 for another shunt repair, again on the 15th of May 1982 for an infection, again on the 27th July 1982 for another blocked shunt, and again on the 30th of June 1983, to lengthen the shunt again.

I had a reprieve for about five years, until the 14 January 1988 when the shunt had to be lengthened again.  I was then fine for about another five years, until I had another bout of Cellulitis in the leg.

Life became a little easier, for a while, I was able to finish school. I started working as a volunteer for the Praise Chapel School as I was unable to find anyone willing to employ me in a paid position.  I did have a chance at paid employment for a short time, when Telstra was willing to give me a try, but unfortunately things didn’t work out. 

In the late 90s I completed a course in Sign English, Stages 1 – 12, which led to some volunteer work at the Vincent State School, working with the hearing impaired for approximately two years. I moved on to the Townsville West State School, and worked there in a volunteer capacity for five years. I currently work with the Red Cross at the Townsville Hospital again in a volunteer capacity, supervising children in activities whilst they were in hospital.

On the weekends I volunteered at a place called The Beacon, where children could come and play and use computers and other games. I supervised their activities.

I was on holidays with my family when I became very ill on the 15th of May 2002. When I returned home I was admitted to hospital with what they discovered was two holes in my bowel, this time I was very lucky to survive. The holes were caused by some old plastic tubing which was left inside from one of my shunt replacements.  Unfortunately because of all the infection and scar tissue in my stomach, the shunt started to play up and had to be removed and replaced several times. The first time was 24 June 2002, and again on 28 June 2002, again on 10 July 2002, and then once more, on the 13 July 2002.

I started to believe things were back to normal until I had more trouble on 19 January 2003, when I had another shunt blockage. This was followed by several more, with it happening again on 18 June 2003, 28 August 2003, 9 September 2003, 10 October 2003 and then on 21 October 2003.  Finally things went back to normal, but only for a short time, as I had to have another operation on 18 January 2005 for a hernia repair.

Now other than intermittent visits to the Emergency Department for infections, either bladder or legs, I have had some reprieve for a while, God willing I can only hope things stay that way.

Why I was born with Spina Bifida I may never really know for sure, but after 30 years, the government’s health study of Vietnam veterans has shown that an alarming number of veterans had fathered children with deformities, and Spina Bifida was 800% more prevalent in veterans, than the equivalent number of men who were not.

As a result of that study, they could not deny that my disability could be attributed to my Dad’s service in the Vietnam War, where they have since discovered that Agent Orange, which was an insecticide widely used during this period, was the probable cause. This is why the veterans Department now give me some financial assistance, in acquiring resources to help me in my day to day life, such as wheelchairs, crutches and other equipment as needed.

I started working at Able Australia in 2013 in a voluntary capacity as a Youth Worker. In 2014 I was offered paid employment and to this year ‘2021’ I remain a valued employee. In my work journey I have gained many skills, these include – customer service, computer skills and working within a team environment.

As Able Australia are community orientated and assist people from all walks of life, I have gained a respect for others that are also facing every day challenges. Through my resilience I have been a good listener, have been able to show empathy and compassion.

I live on a disability pension and reside with my parents in my own little unit. Thanks to their help and support, they were able to assist me in purchasing my first car. It was modified with hand controls, and when that was no longer mechanically sound, I was fortunate enough to get my next car given to me as a gift from my grandparents. This enables me to be a little independent and continue my work. It allows for me to pursue my hobbies which include, wheelchair basketball, fishing, tenpin bowling, swimming and I even managed to fly an Aeroplane with my cousin instructing. Other hobbies are playing the Guitar, the organ, stamp and coin collecting and making my own jewellery out of beads.

My life expectancy was between 30-40 years old, I am now close to being 50 years old. I am the oldest living person in Australia living with my disability.

My disability has never stood in the way of me achieving the things I have wanted to do in my life. My advice to others who may find themselves in a similar situation is to believe in yourself and you will achieve your dreams. We can only play the cards we have been dealt.

Yours truly,

Roy Catterall