Henrietta, my niece, was born over three years ago with multiple complications, including TOF, which required her to have (and continue to have) operations.

TOFS supports children and adults with Henrietta’s two main conditions – oesophageal atresia and trachea-oesophageal fistula (“OA/TOF”) – and all the complications that come with it. Put simply, she was born with part of her food pipe missing, meaning nothing could pass from her mouth to her stomach (she couldn’t “swallow”). The bottom part of her food pipe connected to her windpipe, so unknown to us, each time she was fed at birth, her lungs were filling with milk and stomach acid. 

Henrietta, at just 3, had 5 trips to theatre in her first 15 weeks of life, is now well into double figures of surgeries, is tube fed, has a cocktail of drugs, but is also a bright, bouncing girl who attacks any challenge alongside her brothers, and is full of attitude! 

Her most recent surgery was last week, and resulted in 3 days in and out of St George’s, and a mountain of tests which have discovered more unusual anatomy, and a diagnosis of…more tests! The photos in the collage show her on day 2 of life, and then her on Tuesday and Thursday of last week in hospital, and then Saturday at her brother’s birthday party.

TOFS is an incredibly small charity that receives no government funding, and which was hit incredibly hard by the pandemic, as about 75% of its income comes from member-organised fundraising, and events like the London Marathon/Great North Run etc – none of which happened when we were all locked in our homes.

What does TOFS do?
•    They provide an invaluable lifeline of support right from the early days on the NICU wards (in our case, St George’s), with a newborn baby who has just undergone lifesaving surgery, through the difficult transitions of drinking and feeding, and from paediatric to adult care, through until the adult years. OA/TOF affects approximately 1 in 5000 births, and 1 in 40000(ish) births have vacterl association (as in Henrietta’s case).
•    They have published a medical-parent cross-over book which guides medics and parents alike through the condition (it is provided free to all GP surgeries requesting it, and on numerous occasions my sister had to hand it to a nurse and invite them to read chapters) as well as guidance for health care professionals treating adults.
•    They are instrumental in funding research to discover the cause of the conditions (which are unknown in over 90% of cases), how best to treat the complications (the primary repair surgery does just that – it repairs, but it doesn’t fix, meaning complications for many children are lifelong), as well as into how the conditions (and the medicines used) affect adults. This latter category is particularly important, as it was only in the 1950s and 1960s that the repair surgery became reliable enough for most children to survive past their first few days, meaning that many health care professionals treating adults simply have not encountered people with the condition, and there hasn’t been any research into longer term complications/deteriorations. For example, my sister is currently on the Parent Advisory Group for the TOAST trial, part funded by TOFS, researching the necessity for a particular category of medication given to newborns, often for many, many years.
•    They schedule talks and meetings, both professional to parent/patient, and parent/patient to parent/patient, to share experiences, new research and just good old fashioned peer support; host two moderated private facebook groups; and publish a regular magazine.

So, what can you do to help? Donate! 

This is a small charity, founded 40 years ago, for which your donations will make a significant difference. 

Many thanks indeed,
Francesca (as well as my sister Alexia and niece Henrietta)

About TOFs, from TOFs:

We provide support for those born unable to swallow, due to the rare congenital conditions Tracheo-Oesophageal Fistula (TOF), Oesophageal Atresia (OA) and associated conditions. TOF/OA affect one in every 3,500 babies, and can only be repaired, not cured. When new parents hear the devastating news that their precious newborn baby has TOF/OA, we want to be there for them. From that first moment, to living with the condition as adults, we offer vital support and friendship along the way. Thank you so much for helping us to support our members.