I am sharing with you all a great story. Meet Steve Wyles, an esophageal atresia survivor. He is now 53 years old and has a fantastic support group on Facebook where we all can ask questions or give advice.
Many times we have concerns or would like some words of encouragement. You can easily type your message and almost instantly, hear back from someone who has gone through or is going through the same. You can also help other families with your own experiences.
Now Steve has created also a wonderful website, www.birth-defect.org run by parents for parents, with lots of helpful resources for all esophageal atresia families. Together we can reach more families, get more information, and help each other.
His story is a great reminder of how hard it is to live with this condition and how you can make it better by helping others in the same situation.
Before you start to read this, can I make the point that as a baby, having the two ends of your Oesophagus joined, does not mean your fixed and thats the end of it…. for most children and adults born with this condition, no way have you been cured…..
Take it from someone who knows, i am 52 now and struggle to swallow with every meal. As a child l hated eating, because it hurt, and if food got stuck it meant l was taken back into hospital. As is the case at my ripe old age, if i cant clear the blockage, its back to Hospital I need to go.
So my advice to anyone who knows a child who was born unable to eat….. GIVE EM A BREAK, it’s hard going as a kid with this condition, and for family, made harder by those around them who think once you’re …… fixed you’re CURED……….IF ONLY.
I was born in Lynthurst in New forest in England on 10/8/1962, back in the day when surviving an operation to re-arrange your feeding tube and your wind pipe was kinda rare. I was there for a few days when it became clear that something was far from OK.
Every time I was fed I would choke it back up.
I was rushed to the Children’s Hospital in Southampton, were the Surgeons, were general Surgeons back in those days. They found out I had something they called T.O.F. a/o. My feeding tube that should have gone down to my tum, was attached to my wind pipe, and wind pipe attached to my belly. This caused me to cough like mad when feeding.
From what I have been told, the op to swap everything back to how it should have been took hours. Well, someone has to be different I guess… I now have what is like an hour glass in the middle of the tube running down to my tum. Every meal sticks at the point of repair as there are no muscles to push it downwards.
I have spent most of my life up to the age of 29 in and out of Hospital, having things stick. Plus while growing you find the stricture area gets narrower, and this had to be made wider, to allow food to pass though, this area, I found after the op, Id eat tubs of ice cream, and suck on ice cubs, I found the cold helped with the soreness.
It was fun at school, when the other kids would say, “Bet I got the biggest scar!”
Yeah right. Mine looks like a shark has had a go. I even have a few holes (drain holes). I used to tell people a shark had me, and they shot at it but hit me… Fun to tell on the dive boat when I’d scuba dive. Some of the look’s were priceless.
Anyhow enough about me. So you ask, why have I set up this website? Throughout my life in and out of hospital, I never meet or was told about any other person who had this thing called TOF/AO. I just plodded on in my own way thinking l was on my own. Until, one day when l was 48 years old and while talking to someone id known for over a year…….. yes a year….. we realized we had same health condition. We were both born TOFS. She had ‘long gap’ which meant in her case, less time spent in hospital, unlike me with the ‘short gap’. Lucky lady…
That got me thinking…
We have all in our time been in Hospital thinking about others, I wonder if there are any others around with same condition?
Was there a way I can help to bring families with TOF kids together? So began 9 months of working on this idea. I produced a lapel badge and I crafted a hand cut silver necklace, placed it on a photo of the world and posted it on TOFS Facebook page. It was shared around the world in one hour.
So if I made a badge that Parents could wear, others who knew what the letters ment would know, but how to get the badges seen? They needed that little extra they needed to sparkle in the sunlight, or hospital lights
If the badges can help people with TOF to recognise each other and bring TOF families together, then the 9 months has been worth it. Remember, I thought I was the only one till I got to 48!
Please Note. This is a None Profit making idea. I didn’t set this up to make money. I set the hole thing up to help. I give my time for free, as do others. We have sent Badges to hospitals, Dr’s around the world to help bring the awareness out that Children are born with these conditions.
My sense of humor has helped me get though my life in and out of Hospitals, allowing me to pick up life skills as I go, I now notice more around me than most do, I find it very easy to talk to complete strangers, I am a very stubborn person, I am just a happy go lucky chap, I try each day to make two people laugh, because laughter puts a sparkle back into your eyes. Dr’s have said to me in the past, you know you wont be able to do that because of your condition? My view was ok, I need to try that little bit harder to over come what they thought I couldn’t do.
As a child I used to dread meal times, but because of the way my Parents were there was no getting away with leaving food, times were hard, I respect my Mother and My Father for the way they struggled to get me to an age where I could understand better and talk to them so they also understood from my point of view.
To date I don’t eat burgers in my early 20s I forced down a burger after it stuck, it had a small splinter of bone in it, which opened me up like a can opener as it went down. (Dr’s comment) One of the most scary times of my whole life, to date.
I spent 8 weeks in Hospital, that’s when they found i also had a hiatus hernia, so something good came from something bad, i remember saying to my Nan after they put me on these white chalk tasting tablets, ‘these are just yuck, I wont be on these for long’ Little did I know 3 years one 3 times a day. Then I was put onto Omeprazole at 25 back then my Dr said these are a £1 a tablet. This small tablet changed my life I still take it now and if I forget by dinner time I feel ill.
As your Child gets older things should get easier for you, and like me they will find their way to cope with things sticking. Getting the awareness of your child’s condition noticed and understood more is now down to you. I have a saying which goes like this. (theres no point in worrying over something you cant change. But If you can change it, why worry)