Month: November 2020

As always there was great excitement in my family at the birth of a son. I was born in 1960 and my parents named me John which means Gods Chosen. After a few days I was diagnosed as having a congenital hiatus hernia, a condition that was re-diagnosed later in my life as a Congenital Diaphragmatic Hernia (CDH). It was this diagnosis that has shaped my whole life. Even now approximately 50% of children born with a CDH die in or around birth and it is the 2nd biggest killer of infants and children in the UK.
Way back 60 years ago they had little understanding of the condition. The doctors said to my parents if he can survive until the age of 2, he can have an operation at Great Ormond Street Children’s Hospital. After 2 years of constant projectile vomiting, keeping down very little of my food and severe stress for my family I was operated on, this was to correct abnormalities to my stomach, oesophagus and diaphragm. My parents prayed for me and the operation which was at the cutting edge of medical knowledge at the time was ‘successful’. My Mother recounts that after the operation due to the severe discomfort I used to sit upright in a chair crying. I had a thoracotomy with a pencil thin scar halfway round my body. I spent my growing years getting food stuck in my oesophagus, this resulted in me being thumped on the back almost daily to dislodge food. I was a happy child though and remarkably excelled at cross country running despite being behind physically. I always questioned as a teenager how my condition would affect me as an adult and wondered if they had mis-diagnosed my condition. “What if they missed something?” Well 5 kids later and after a very active adulthood climbing mountains and playing soccer, at the age of 53 through a set of amazing coincidences I was re-diagnosed as having a CDH. This re-diagnosis in itself has an amazing story behind it. My local GP suspected something more was going on in my left lung then we knew about and sent me for a scan. The scan showed that my colon was protruding into my left lung space and they believed this had been like this since birth. The head of St James Thoracic Department would not hand me over to his team because he suspected more was going on than showed on the scan. When I went into surgery they found I had been living my whole life with a full loop of my colon in my left lung space, pressing onto my heart and over time it had become fused to my diaphragm and to my lung wall. The Doctors were astounded! So, was I, how had my body adapted to living like this and how had it stayed hidden all these years? That one day put my whole life into perspective and so much fell into place? What a relief!! How I managed to excel at long distance running with reduced lung capacity I have no idea, but I was a determined child.
Every birthday I enjoy sharing my story with the families of kids born with the condition, through the Congenital Diaphragmatic Hernia Charity, the charity supports the families of children struggling with the consequences of being born with a CDH. I share from my own experience that there is hope for children that are survivors of CDH even though they are growing up with enormous struggles to overcome.
I live my life daily with a sense of gratitude, gratitude to Great Ormond Street Children’s Hospital, gratitude to the thoracic team at St James Hospital, gratitude to my parents and brothers who endured so much looking after me as a child and gratitude to God. This sense I have of being ‘special’ or ‘chosen’ is what motivates me in life, I long for others to have that same sense no matter how awful their circumstances. I am forever grateful. Faith upon faith upon faith upon faith.

Author: John Lowton