Video transcript:
Hello, my name is Kate. I was born in 1957 with oesophageal atresia and tracheoesophageal fistula and other congenital malformations. I was very fortunate that the obstetric team at my district General Hospital recognised the severity of my problems and I was transferred to Birmingham Children’s Hospital, 60 miles away for emergency surgery, shortly after my birth.
In the 1950s this was indeed a very long distance.
Transport was difficult and the nearest telephone line was 500 yards up the road at the corner shop. The owners were very accommodating and used to run down the road to find a family member who could take the call from Birmingham Children’s Hospital. On more than one occasion to be told I was unlikely to survive.
My dad was stopped by a policeman on Hadley Road for speeding. He was let off once he said I was in hospital and not expected to live.
I believe my atresia was short gap.
My parents thought the operation had been done through my mouth because there were no wounds on my sternum. No one thought to show them the thoracotomy incision.
In those days parents did not stay with babies and when it came nearer to my discharge my mum was allowed to be resident to learn how to care for me. I was sent home with a wooden, high back chair. My parents had no idea why. Possibly to aid digestion, reduce reflux, keep my spine straight. They never knew. Mum said I was always sick when the nurses fed me but never for her.
My memories of Birmingham Children’s are complex in that I hated going there for appointments and inpatient investigations and surgery. I recall being an inpatient in this huge cavernous Victorian building painted cream and green with endless corridors and strange smells of cooked cabbage and disinfectant. Lying flat on a trolley with the ceiling lights whizzing over my head whilst being transported to theatre. Only to lie there alone looking at all the scary paraphernalia which accompanies anaesthetics. Parents were not allowed.
At age eight, looking out of the windows on the third floor and thinking I could see my home across the rooftops of Birmingham. At this point I hatched a plan to escape and made it down to the ground floor before being returned to my bed upstairs. I guess the hospital wristband gave it away.
When I was home after an inpatient stay, the relaxed family routine was quite strange, and I oddly missed the hospital routines and friends I’d made there. How quickly we adapt to institutional care with meals and bedtime set in stone.
Swallowing was a tricky challenge. Always needing a drink close by. My mum was a force to be reckoned with. She insisted cups and water jugs were placed on the dining tables at school. This was a first. Yet strangely the teachers who sat at the end of the dining hall always had water. I was prone to chest infections, pleurisy, and I had impetigo which was horrid. Again mum tracked down the source. School roller towels which were damp, grubby, and frankly pretty grim. She took the LEA to task and paper towels were installed in the school.
I could run short distances quite fast and swim a little but always panicked if my feet couldn’t touch the floor. I mostly turned away from sports as it was just too arduous.
In my early twenties I started to wheeze and was short of breath. A diagnosis of asthma followed with prescriptions for inhalers to try and manage it. My peak flow recordings were always low. And every winter for years I would have debilitating chest infections, antibiotics, and steroids. The other problems I had were later related to reflux – tickly cough, horse voice, recurrent sore throat, fatigue, etc. But in the late 1970s early 80s these symptoms were not recognised as gastroesophageal reflux disease and being a complication of OA with aspiration and minute particles of food or drink into my lungs.
I think the tendency to underplay symptoms is recognised in those who are born with complex anomalies because it’s our norm. We don’t know any different. The prospect of talking to a healthcare provider who does not view us holistically, who thinks these symptoms are not OA related, is daunting. Plus reluctance to face further medical investigations. We tend to turn away from the people who may be able to help us.
Eventually all this caught up with me. Reduced exercise tolerance, poor peak flow readings, poor response to inhalers and antibiotics, and an increasing need for oral steroids and nebulized Ventolin. In my 50s I was beginning to feel ancient when my friends were clearly doing the things I was struggling to do.
I was very fortunate to attend a TOFS conference and meet Professor Alyn Morice from Hull. Like other others in the room I was introduced to the fact that our symptoms were likely to be caused by GORD associated with oesophageal atresia and dysmotility. I started PPI, esomeprazole. That was a life changer for me. I can never thank Professor Morice enough for seeing me on a path of improved health, reduced number of chest infections, increased exercise tolerance.
I am fortunate to have excellent GPs and the in-house pharmacist who understands the importance of my treatments and the potential risks around long-term PPI. I have vitamin and mineral screens and blood density and bone density scan only last year. If I could change anything it would be myself refusing to go to the GP and explain all those symptoms. I thought this is my life with OA and I need to just put up with it.
I’m very pleased to say that in my mid-60s, on walks with my husband and our dog, I can chat happily without the need for stopping for Ventolin. Most days I walk three miles on my treadmill especially when the weather’s too miserable to venture out. As that cold air blasting into my lungs will cause coughing spasms. I also swim but prefer to be underwater as I think it’s more comfortable for the Hemivertebra in my neck.
All in all, I am living my best life ever despite being born with OA VACTERL.
Being part of the TOFS community has been amazing. I’ve learned lots about my condition and have made some very special friendships along this journey.
Realising you’re not alone with this rare anomaly makes you stronger and well determined to keep putting one foot in front of the other. And knowing that together we can help improve health outcomes for all those born with OA/TOF.
