Many specialists (particularly adult specialists) may not be very familiar with this condition, and its potential complications. You may wish to suggest they look over this review:
Long-Term respiratory complications of congenital esophageal atresia with or without tracheoesophageal fistula: an update
Kovesi T. Children’s Hospital of Eastern Ontario and the University of Ottawa, Ottawa, Ontario, Canada.
Dis Esophagus. 2013 May;26(4):413-6. doi: 10.1111/dote.12061.
Another, more recent review of long-term outcome of EA in people throughout Finland has been published by:
Long-term results of esophageal atresia: Helsinki experience and review of literature.
Sistonen SJ, Pakarinen MP, Rintala RJ
Pediatr Surg Int. 2011 Nov;27(11):1141-9. doi: 10.1007/s00383-011-2980-7. Epub 2011 Sep 30.
TOFS leaflet prepared by TOFS (the UK EA Support Group ). This leaflet aims to support in particular GPs and adult EA patients in understanding and discussing their condition.
It refers to the ongoing issues which adult EA patients may experience.
Resources available on the Internet for families include:
TOFS British Support Group https://tofs.org.uk/home.aspx
AFAO French Support Group http://www.afao.asso.fr
Most people have never heard of oesophageal atresia (OA) or tracheo-oesophageal fistula (TOF) and Internet sourced information can be questionable and neither filtered nor put into context. Containing contributions written by medical experts, this is where The TOF Book comes into its own – to be kept close to hand and referenced time and again. It is written in a language that all can comprehend – and is superbly illustrated. This unique book includes information about new surgical techniques and medications; more information on VACTERL (a group of conditions which can occur alongside OA/TOF); updated research on long-term outcomes; insights into adult life… and much more. The TOF Book should be in the home of every TOF family. It is also an invaluable book for all health professionals involved in the care of patients with OA/TOF, and should be mandatory reading for surgeons training in children’s surgery. A completely re-written version of “The TOF Child” (1999), the new title reflects increasing interest in the progress of adults born with OA/TOF. Co-edited by Consultant Paediatric Surgeon David Crabbe and by Vicki Martin (herself an adult TOF) multiple contributing authors ensures that information represents practices around the UK and worldwide.
This book has been written as a narrative through the TOF childs eyes as they start school for the first time. It also gives facts about the TOF cough, being sick and getting food stuck. Because its written as a 5 year old, it has words that are simple to understand and colourful pictures, making it easy for other kids and adults to understand such a 
complex condition. Its a great book for kids to grow up with and share with their friends and family.It shows that there are other TOF kids like them from around the world but also explains that even though TOF’s are different they are also just like any kid. Tracheo-Oesophageal Fistula (TOF) is a rare congenital condition that affects one in every 3,500 babies.
Esophageal Atresia / Tracheoesophageal Fistula is a rare birth defect. There are many questions and challenges that arise for a family. This book was written by a mother of a TEF child, to help explain to your growing EA/TEF child how they have eating and internal differences. The book will help you give them a visual to understand more clearly. It will also help you to open up the conversation about who they are, with illustrations that have been created for the child.
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The 7th international Conference on EA will be held in Istambul, Turkey, in 2025.