My story so far:
In 1959, I was born at Royal Alexandra Hospital in Edmonton (RAH), Alberta. Upon birth, I was immediately transferred to the University of Alberta Hospital (UAH).
I was born with Esophageal Atresia (EA) & Tracheoesophageal Fistula (TEF) along with other anomalies. EA/TEF needed to be treated immediately. The repair of the fistula was performed in the first couple of days and I was fed by a tube that went into my stomach.
The esophagus was the main issue as there was a long gap between the end of the esophagus in my throat and the esophagus going to my stomach. A replacement of the esophagus with a retrosternal colon was performed at UAH when I had reached a certain weight (~20 lbs). I would spend the first 2 1⁄2 years in the hospital as a result of the numerous surgeries performed to keep me alive. I was a VacTErL child meaning that I also had other congenital anomalies. One of the medications used (tetracycline) caused my teeth to become discolored.
As a result, l never took care of my teeth & had them all pulled in December 2017. I wore both a Milwaukee & Boston brace during school years. Neither brace helped any as my spine issue was part of the main problem, I was VacTErL. My right leg, foot & big toe were also smaller than on the left. I never walked till I was 4 yrs. old. Swallowing was difficult at times as food would get stuck in my throat & I would need to massage my neck to force the food down.
The colon in my throat would become stretched & the ends constricted thus routine maintenance needed to be performed (dilation, remove constricted ends…). In 1979, Harrington instrumentation was performed posteriorly at the Foothills Hospital in Calgary, Alberta. In 1988, I was admitted to Mt. Sinai Hospital (Toronto) on June 5 for the removal of the right sternoclavicular area including a portion of the manubrium in the inner aspect of the clavicle and first rib. This was done to increase the size of the thoracic inlet. Gastric pull-up was then done. Also in 1988, I was admitted to Toronto General Hospital & had surgery on November 25.
The entire posterior spinal instrumentation was revised. The Harrington rod was removed and then a Cotrel-Dubousset instrumentation was performed by Dr. Stephen I. Esses. My body was rejecting the hardware so the hardware had to be removed. A skin graft was needed on my neck & left shoulder (back) so it was removed from my right hip area. He then fused my spine from T1 – L5. The combination of severe Kyphoscoliosis & a gastric pull up has now resulted in me having Restrictive Lung Disease and also Gastroparesis.
Despite all the medical complications, I’m now retired after working 31 years. I have 3 kids & 5 grand kids. For all those with EA/TEF younger than myself (65) & those parents of EA/TEF kids, it does get easier BUT you/they will require lifelong support to get the most out of there life. [Jos 1:9 NIV] (9) Have I not commanded you? Be strong and courageous. Do not be afraid;
do not be discouraged, for the LORD your God will be with you wherever you go.”
