I am 21 years old and was born with Tracheo-Oesophageal Fistula (TOF) and Oesophageal Atresia (OA). I am running The Great North Run Half Marathon in September 2024 on behalf of the TOFs Society / Charity to raise awareness for this unheard / rare condition which affects roughly 1 in 3500-5000 babies.
I had a repair by Mr Matthew Jones at 12 hours old at Alder Hey Hospital having been rushed from Glan Clwyd Hospital. He ultimately saved my life. Following this, between the ages of 2 and 20 I have had 8 scopes and within this I have had 6 dilatations.
TOF is characterised by an abnormal connection between part of the oesophagus and the trachea (windpipe). OA occurs when a short section at the top of the oesophagus (gullet or food pipe) does not form properly, resulting in a blockage. As a result, food cannot pass from the throat to the stomach.
This condition still affects me to this day having recently had a scope in March 2024 with ongoing issues. People who are born with TOF/OA have a significantly increased chance of having the ‘TOF cough,’ respiratory problems, asthma, chest infections, swallowing issues, choking, acid reflux, and reduced appetites. This is not just a huge burden on the person having to deal with the TOF/OA condition but also to the mother and the family members of the person with the condition.
This condition needs more awareness and recognition considering my mother did not know I was a TOF/OA baby until I was born. Despite advances in ultrasound technology, the diagnosis is made before birth in less than 20% of cases. This is incredibly low; it could be argued with more advanced technology and earlier spotting of this condition there could be increased preparation and contingency plans put in place once a TOF/OA baby is born.
I am also running this half marathon to display to fellow TOF people that this condition does not define you as a person and does not necessarily mean you are at a disadvantage in society. I have always battled through with the condition and have never let it stop me living life to the maximum having been an avid sport player since a young age despite this very rare condition.
Sean McEniff.
