I was born at Burnie General Hospital at the end of 1970 to a single mother. I was extremely mucousy and a tube could not be passed into my stomach. I was flown to Melbourne to the Royal Children’s Hospital where it was diagnosed that I had Oesophageal Atresia with Tracheo-Oesophageal Fistula 3B. My surgeon, Helen Noblett, repaired the fistula and performed a Gastrostomy with a feeding tube placed into my stomach due to the risk of reflux. There were many breathing difficulties because of a Bronchial Stenosis of the right lung and pneumonia.
I was put into foster care because of my medical needs and distance from my birth mother. She subsequently signed papers to have me adopted out. I slowly progressed and began to take milk orally (with a lot of choking). My surgeon explained to my adoptive family that she was waiting for a child like me to try a new procedure as most parents didn’t want to take the risk. She had previously practiced this procedure only on dogs and I was the first human to have it performed on. In later years she was asked to lecture and teach this new procedure in other countries.
I remained in the Royal Children’s Hospital for several months whilst my oesophagus healed and until I could take oral feeds without choking. I was in and out of a baby’s home and the hospital as I had many bouts of pneumonia and vomiting.
My adoptive parents and their three older children chose me in November of 1971 and took me home. They were given a brief history of my condition but were in for a surprise. Over the next few years, I was rushed to hospital with pneumonia, vomiting (food and/or blood) and choking. I soon learnt to eat very slowly to avoid food getting stuck and only ate foods that didn’t require a lot of chewing.
My earliest memories are of projectile vomiting, many barium swallows (yuck!), coughing and wheezing, x-rays, doctors and specialists visits. I was referred to a thoracic specialist due to a curvature in my cervical and thoracic spine. We were told that this is quite common in children who have had my condition. I could never get a straight answer out of the doctors as to whether this was part of my birth defect or as a consequence of the operation. The surgeon kept an eye on my progress with a view to operating in my teen years. I used to hate seeing him as he was very rude and always had lots of medical students with him. I was made to strip off to my undies and show them my spine. They rarely spoke to me and I would get out of that room as quickly as possible.
Over the years my condition improved. There were fewer choking problems, however, my breathing was always an issue. You name it, I had it. Bronchitis, Pneumonia, colds, Tonsillitis, flu etc.. I was susceptible to anything going around. I missed a lot of school due to illness or doctor’s visits. My mum used to bribe me with a visit to the toy store when especially horrible tests would be performed. I was diagnosed with Asthma when I was ten years old. My health seemed to improve once I was on the Asthma medication and I grew into a relatively normal teen.
One thing I avoided was wearing bathers in public as everyone asked about my scar (on my right side). I found my operation difficult to explain and to be honest I didn’t understand it that much. Therefore, I began to tell people that I had been bitten by a shark. It was much more fun to see the shocked looks on their faces rather than the blank look that the operation story elicited. Every telling would become more involved and descriptive. Once I had a better understanding of my operation I began to tell people the truth which turned out to be almost as fun as the shark stories.
I found that once I became an adult then the doctor’s visits stopped and there was no follow up care. When it came time to have the spinal operation I refused as I could walk and move pretty normally and I didn’t want to spend six months lying prone in a hospital bed. There has only been one follow up an appointment by a separate Australian hospital doing studies on my condition when I
was thirty-two. It was so good talking on an adult level to a doctor who understood the condition and could explain it in simple terms and allay my worries that it might be hereditary.
As an adult, I have very few swallowing problems as I still chew my food slowly. My main health issues are to do with breathing and I finally feel that I have that under control. I saw many doctors and specialists who brushed off my wheezing and coughing as asthma, allergies or TOF. I am currently seeing a specialist who understands my medical history and explained that my lungs are scarred from many lung infections. My current medication and treatment means that I only have six monthly appointments and no emergency hospital admissions.
I have been married for almost twenty-five years to Steve who is amazing and looks at my scars on my side and stomach as badges of honour. I also have two healthy children, Dylan, and Matthew who are both adults now. It is amazing looking back on my medical history and how far I have come.