Our daughter Effy was born in September 2021, during one of her first feeds Effy went purple and floppy and was ran to the neonatal unit at Treliske. She was transferred by ambulance to Bristol, where we received news that she had been born with an undiagnosed birth defect called TOF/OA.
This meant in simple terms that her oesophagus (feeding pipe in the throat) was not joined to her stomach, leaving her stomach unattached from her oesophagus.. meaning that any liquid or food given to Effy would never have reached her stomach, therefore she was born unable to eat. Any feed I had previously given her had collected and filled in a pouch in her oesophagus, rising and filling until coming out of her mouth and nose, which in turn flooded her airways to the point she became unresponsive.
Effy required ultimately life saving surgery and received this at 3 days old, followed by 15 days on the Neonatal Intensive Care Unit in Bristol. It wasn’t until day 11 of Effy’s life that she used her repaired system for the first time, receiving milk from her mouth to her stomach naturally. Immediate neonatal surgery is a treatment, not a complete cure.
TOFS we later discovered are a charity that would become very close to our hearts, they offer a helping hand in support and advice when it comes to dealing with our new way of life with Effy. Unfortunately TOFS receive no public-sector support at all and solely rely on charitable donations.
We would love to give back by running the London Marathon in aid of this amazing cause that teaches us a number of things including how to feed our daughter, what to feed her, what signs to look out for of her choking, any signs of her food pipe narrowing, while offering support to us for any of her regular hospital visits, and ultimately the TOFS charity holds the knowledge and support for us and many other families dealing with this condition, whatever query we may have.
Without their support we would have been lost throughout this journey and Effy’s story could be very different, so please if you have anything to spare we would be grateful of any donation, no matter how big or small.
Thank you in advance, Amy & Ash.