A Mothers account from 1983
27th January 1983, our tenth wedding anniversary and the arrival of our precious TOF/OA baby who turned our lives upside down, and has enriched it ever since. But the journey from then till now 34 years old has been a fraught and at times scary and worrying one but one that has filled my heart with pride as my lovely son has fought on despite all the setbacks that this condition and associated ones throw at him.
My pregnancy had been one of being scared all the time, my first son David has only lived one month and had died in July 1981, we did not know but a tiny valve called the urethral valve leading from his kidneys had not developed properly and the back flow was slowly blowing up his kidneys – it was not picked up in special care where he had gone as he was early and when he became ill at home and we rushed him in he was given a colostomy, completely wrong diagnosis and I held him as he passed to Heaven. The Black Hole we entered was unbearable and the only way to honor him was to become a Counselor for Bereaved Parents because I understood the Hell they are in.
When I found out I was pregnant with my Steven I was so happy but so very scared, little did I know that this condition has already manifested itself in the early stages and the havoc it was to cause I sort of thought God would see that I had tried to help others and let me have a normal healthy baby this time so when I went into labor on the day before our Wedding Anniversary I hung on as I really wanted this little one to be born on that special day, we knew he was a boy from the Scans, what I now know is that I had a lot of fluid and this had caused concern, maybe they did not want to tell me. I prayed that if he had to have something wrong with him, it would be obvious so we could put it right but I did not want it to happen!!!
We went into the delivery room and it was starting to go well, but then all of a sudden he shot back up and turned sideways and with all the fluid they said he was drowning, I said please get him out, I remember saying if there was a choice between him and me, he must live and I would go.
We literally raced to the operating theater for an emergency cesarean, I awoke with the Pediatrician standing by my bed, no baby, my heart was breaking, It was the same doctor that had been with me when I lost my David and she had tears in her eyes. I hardly took in what she was saying to me but it was that my precious boy had no food gullet, he had been bubbly and they could not put a tube down to clear it and realized this condition. I remember saying How long can he live without being fed? and where is he now? I need to see him before he dies.
He was in Intensive care all wired up but she said there was an operation they could do that was risky, but he needed to go to Birmingham Children’s Hospital, as it was specialized, I said please please do all you can to let him live, I cant bear this, I was wheeled down to see my baby in his incubator, I said how dare they say that without a firm belief as it was is conjecture BUT I would love that baby whatever he had up with him BUT he was not all those things he just said because I had looked into his eyes and his soul and he was ok ,I would really like to take my 6 foot Super talented drummer boy who has grown up to look after Adults with all sorts of mental health problems and to travel the world and tell him that HE should never tell parents unconfirmed rubbish as they could abandon their children Steve would like to punch him lol I would not let him don’t worry.
He got gastro enteritis and was so tiny, this was the last thing he needed- they did not do anything about it so I took him out, my dad paid for a private nurse and we got him better at home, all this tube feeding was so new to me but I did it cos I had to. When the diarrhea stopped we went to a local hospital and we had him put on soya milk now as his insides were intolerant to cows milk.
He was only 3 months and so much had happened and already I was fighting hospitals and questioning them.
The next nine months passed in a round of feeding down the tube and getting Steven as big as I could manged to get him to 19 lbs, all I did was feed and walk the dog to the park, it was our outing daily as we could not go far as we had to tube feed and keep everything sterile. We took loads of photos of our boy and I was in local papers even then to raise awareness and we had fund raising days for a charity. And the time crept nearer to what we thought would be the end of this tube feeding and a start of a normal life, little did we know!
When Steven was one he went in for a Colonic Transplant to Birmingham, we celebrated his birthday in that hospital little knowing that far from being fixed, he was worse than ever .
His operation had we gone well we had been told, they lied, so when he kept being sick and not able to swallow and they did horrific things like putting string with lead weight on it down his throat in theater and he had a massive infection and was losing weight I stepped in BIG TIME. I refused to sign anymore consent forms to useless and potentially life threatening operations, he would have died on the table on one of them as he had a massive lung infection, I dreamt that one, I literally swear my mothers intuition kicked in big time and I came home from the hospital to phone up the one person I knew could help – The most eminent surgeon in the World – Professor Lewis Spitz at Great Ormond Street, GOSH. I had heard so much about him, I had to talk to him myself and soon.
Ringing up the famous London Hospital and talking to his secretary may have been daunting to some people but I NOT me, cos I knew it was my boys only chance of life. I rang and asked to speak to him and his secretary said he would ring me back in a few hours, and lo and behold I answered the phone. But we could go out and be a more normal family than ever before at last. We could pack picnics and go to the seaside and show Steven the World outside of Coventry and hospitals
And so the years went on, then when he was 8 we were at a gig, steve is a drummer, has been since he was 4 years old and we went to see bands all the time at clubs, and he fainted, this we released was the start of photo sensitive epilepsy, another blow, another thing to cope with!
All the operations and anesthetics had contributed we think, he had had over 20 at Birmingham But now we know that it could have been Dumping syndrome, we only just found out about that one recently.
He eventually had medicine for the epilepsy after more fits and when he was a teenager was given some new dissolvable tablets that control it, he has not had a fit for 10 years now, but is too scared to stop the medication as he drives and needs his car and cant risk it.
We found out when he got a piece of plastic straw he had bitten stuck in his throat and we had to bomb down the M1 (Motorway) to London to get it removed by Prof that he also has One and a half kidneys not two, his spine is slightly curved at the top and two of his fingers on both hands have one bone missing, the list seemed to go on on and on as he got older. He developed SVT as well though this again could be the Dumping syndrome. We find that Medics don’t know what is going on in a lot of the time and I have actually interviewed adult doctors before letting them loose on my boy, if I am not happy I go elsewhere –But we have a good surgeon now at University Hospital Walsgrave Dr Nicola Burch, she has been excellent and got Steven on some new medication that helps to stop the awful bile reflux.
I have seen Steven cope with so much, been in so much pain at times been scared of what is happening to him and been so brave and just got on with it all, and grown into an amazing man who has an amazing job, an amazing talent as a musician and an amazing partner and relationship I am very proud to be his Mum.
Meet Steven Born with TOFs
Stevens write up
Drums have and are my life saver if it been on a life support machine they kept me going since a kid so if it went for them I would not be here
today. I Steven a 34-year-old healthy adult TOF have endured a horrific childhood full of emotional pain as my mum has explained in her story. I am focusing on the positive side to my story is the opposite full of adventure, driving, food and travelling the world most importantly love.
With my mum dad splitting when I were 7 years old I emotionally found it tough growing up in between two different lives and experiencing both sides of the fence so to speak. I gained a step family on my dad’s side aged 10, and a step-dad with my mum.
I have played drums since I can remember always in various bands though the years, going to see live gigs and live arena concerts – which I’ll mention later. When I was aged 14 I realized I fancied guys – boy bands one in particularly ‘Hanson’ but at a young age I didn’t know the actual term or the meaning being gay kid was. I passed it by for many years but inside I knew I didn’t fancy girls, but hey thought this was normal at the time plus I felt I wasn’t clued up about guys/ girls as in a more close friendship way I guess. After leaving school I went to Music College in Coventry to study music performance and technology. There I met UKs session drummer Karl Brazil (Robbie Williams, James Blunt) who would give me the confidence to continue drumming and perfect my talent. At college it became more apparent I fancied (in my words digged) guys in an affection way. So for me it was kinda hard as I didn’t not speak or tell any of my friends, parents or anyone and just went along with the flow and started exploring at a later date again thinking it’s not kinda rock n roll for a gay drummer lol
Then attended music colleges in Portsmouth and Worthing to then only relocated and move with my parents up too Knaresborough, North Yorkshire. By mid-20’s I finally come-out as being a gay. I felt comfortable with my sexuality but for my parents it was hard but they wanted me to be happy like all parents do in a child’s life. My dad wasn’t keen – being homophobic and my mum saying she wanted grandkids but I had other options like fostering or adopting kids later on in time when it was right, that had always been my plan for me. I consider myself luckily as in the past seven years I‘ve been fortunate to have travelled the world experience place most people dream off. In 2005 I passed my driving test first time both theory and practical in an automatic and then four years later in a manual car. I adore driving which I’ll mention more about later.
In 2009 I became a support worker at United Response in Harrogate and supported vulnerable adults with physical and learning disabilities- This would be the start of my caring role adventure in life.
In 2009-2012 I worked as a Mental Health Music Mentor teaching drums and music production at Orb Community Arts – A creative arts and skills focused charity providing opportunities for vulnerable people in Harrogate, and Knaresborough.
I had a dream of exploring America in 2010 it was a time to grow up to a proper man and gain confidence. I took myself off to the city that never sleeps Seattle for a whole month. A city I call my second spiritual home. I learnt many new aspects to life and a chance to prove a TOF can overcome any barrier and have a massive learning curve in life. It opened my mind up spiritually, met amazing friend who would change my vision of life – LBGT community, food, exploring possibilities, driving on Seattle roads which I drove up to Vancouver and back to Seattle in one day in a left-hand drive Saloon car which was daunting for anyone but not me – best experience ever plus met a nice guy who I admit I fancied at the time of our meeting named Denver who I still keep in touch with we are close friends.
Back home, fast forward serval years in 2013 when I relocated to Coventry my home city, I started working for People In Action in their Assessment Unit as a Support Worker, supporting vulnerable adults with challenging behaviours.
In 2013 I met my soulmate love of my life Paul. We are very happy couple together – we share wonderful experiences, sites, smells, architecture, and the native cultures together travelling the globe. So far since 2013 we have visited since England London/ Manchester/ Liverpool/ Brighton/ Blackpool/Birmingham, Italy Rome/Milan/ Pisa/ Bologna, Russia St Petersburg & Moscow , Republic of Ireland
Belfast, North Ireland Dublin, tour of Scotland Edinburgh/ Glasgow/ Sterling/ Aberdeen, Hong Kong, Japan Tokyo, South Korea Seoul, Poland Krakow/ Warsaw. Are both super fans of Sooty Show and share our love for food my favourite being Chinese and Japanese.
Myself and Paul are both music nuts enjoy going to watch live gigs and also arena concerts – my favourite artists Years & Years, Justin Bieber, The Vamps, Bruno Mars Tribute, X-Factor Live, Ed Sheeran, Red Hot Chili Peppers, James Blunt, Joe Dolman, Jack Hopkinson, Jay Brannan, Shawn Mendes (2017) Lady Gaga, John Legend.
My musical background as a TOF drummer I have performed many live gigs and recorded with several bands though my drumming years since my college days. I am currently drummer for a Rock/ Alt/ Dance band To Kill A Kaiju but previous notable bands include Bands – Laurence Wood Trio, Hargreaves, Ego killer, Calton Kelly
Steven has a passion for a eating healthy and is a fan of British GB Diver Tom Daley. He also has a keen interests in watching movies, driving his Seat Ibiza FR car, and follows his football team AVFC.
Final words, despite Steven’s TOFS condition and Epilepsy he has battled through like a warrior at war and fought beyond believe achieving my hopes, dreams and most importantly gaining love from his soulmate partner. I would like to make awareness to doctors and medics throughout the world to gain knowledge understand US adult TOFS for who we are, what we are capable of doing in life and not to ignore our condition of for us to explain it relentlessly as I have to time and time again. TOFS have a voice so let us tell you our experiences in life.
“Drums have and are my life saver if it been on a life support machine they kept me going since a kid so if it was not for them I would not be here today”
Visit Steven’s New Blog Page just been set up http://sdcshelley.wixsite.com/tofdrummer17/about
From Steve Wyles
Sometimes in life things don’t start out rite, there are a lot of Families that split up from the sheer stress of having a child, seen by others as not normal.
When I and my Wife adopted out Daughter, and we found she was really not well, we where told by Social Services that the stress could split us up. I have been reading the groups set up to give support for the Families with the children born like myself, and Steven above, bringing a child into this world is hard enough at the best of time’s, let alone one that will need a life time of Hospital stay’s, as a child in Hospital one thing that struck me more than anything, was the Families that had other children, like mine, I had a Sister.
Back then Parents could not stay, that in its self brings emotional problems etc, but I always felt that the Sisters or Brothers of the child who was classed as ill, followed that child around. Stevens account above is frank and very positive, as you have to be, as an adult, with a condition where you still struggle to eat day in day out.
For Steven it was his drumming that helped him get though, even to this day, but he has also blocked out the life of trauma, he has gone though, I guess like I have, I myself only wont to remember the funny side of things, that is my way of dealing with the constant lack of understanding I have come across, from the people in the medical profession, who it seems are hell bent on finding why for babies, but for us Adults across the world, even now the time of writing this we are losing friends to the conditions we where born with, for me its kinda one sided. So I put my own money no one else’s money, into bringing awareness for children and adults a like across the world, even to the point of drawing up a set of survey question’s with two friends, and getting a leading USA research Hospital to run it legal, the biggest ever tried to date survey, and guess what happened?
Yep it was slatted as not being real?
No Adult or Parents really took it up to try and help the Doctor’s understand better, to allow the biggest data Collection of all time? I am disappointed, and feel let down, that people didn’t take up the challenge of allowing better understanding for people like Steven above, with his drums, and their own children, going though what we did. Only one small USA Charity ran it. That is very very sad.