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.
Long-term complications of congenital esophageal atresia and/or tracheoesophageal fistula.
Kovesi T, Rubin S.
Chest. 2004 Sep;126(3):915-25.
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:
EA/TEF Child and Family Support Connection, Inc. Web site: http://www.eatef.org/
TOFS Forum. Web site: http://www.tofs.org.uk/index.php/forums/
AFAO French Support Group http://www.afao.asso.fr
Web site: http://bridgingthegapofea-tef.com/support_groups_on-line/eatef_support_grps (this web site also lists many other EA support groups).