TOF - Tracheoesophageal Fistula and Oesophageal Atresia

Hi, my name is Saoirse White and I am the mother to a little girl called Lilly-May who was born in May of 2021. Lilly-May was born with a rare condition called Tracheoesophageal Fistula and Oesophageal Atresia also referred to as TOFs, although, by no means does this word define my little girl: her story is unique and proves that she is nothing short of our little hero. We use the word TOFs a lot, we say it to Doctors, the charity is called TOFs, the community is referred to as TOFs so naturally I thought about this word a lot and what it really means and I feel very much also stands for Tremendous, Outstanding and Fearless.

TOFs is a very rare condition and affects children with breathing, swallowing, eating and reflux. There are many variations to this condition and their story isn’t always the general normal story. We TOF parents do not take our baby home the way others do, our feeding journey is a little different and our little ones can be very noisy. They have their own unique story and I wanted to create something for them to tell their story.

On the night of the 24th May (the night Lilly-May was born) I lay alone in a hospital, no baby, no husband, I felt so alone so I joined the TOF Facebook page and told my story in the hope that others would help with their words.  Over 200 parents wrote under my post and told me that everything would be okay and that I would be astonished and amazed at the warrior I had just given birth to – they were so right! Of course, at times it is tough but overall I have absolutely loved every single second of this journey – this is her story and I am so honoured to be part of it.

I have created this book so that all these incredible warriors can tell their story. The book is full of emotions but as you close the final page you will feel nothing but an overwhelming sense of pride.