Note for new parents: This section is aimed at helping you to understand TOF/OA a little better. Start by reading about TOF and OA, then click to find out more when you are ready. Our range of leaflets, our book, The TOF Child and our newsletter, Chew, may be of interest to you in the future.
Tracheo-Oesophageal Fistula (TOF) and Oesophageal Atresia (OA) are rare congenital conditions of the oesophagus (food pipe) and/or trachea (airway) that affect one in every 3,500 babies. Babies born with TOF/OA need to have intensive neo-natal care prior to corrective surgery, normally within days of birth.
Some children have to undergo additional surgical interventions later on in their lives. Whilst many children born with TOF/OA will experience only a few problems, others may have difficulties with swallowing and digesting food, Gastro-Oesophageal Reflux (where the acidic stomach contents pass back into the lower oesophagus) and respiratory problems. The effects of surgery and associated health problems can add a great deal to the usual challenges of parenthood.
Currently nobody knows what causes TOF or OA. For the new parent of a TOF child, this is very important to understand - it was not your fault, you couldn’t have done anything to prevent it.
With the benefits of modern medical intervention and the active support of groups like TOFS, the outlook for children with TOF/OA is very positive.
In Oesophageal Atresia (OA), the baby is born with a pouch at the top of its oesophagus (food pipe) which prevents food from reaching the stomach. Prior to surgery, this pouch can fill up with food and saliva, which can eventually overflow into the baby’s trachea (windpipe), entering the lungs and causing choking.
In Tracheo-Oesophageal Fistula (TOF), the bottom end of the baby’s oesophagus is joined to its trachea (windpipe). Without surgical intervention, this causes air to pass from the windpipe to the foodpipe and stomach. It can also allow stomach acid to pass into the lungs.
Some babies with TOF/OA are also born with problems in other parts of their bodies, such as their limbs or spine. This is known as VACTERL (Vertebral, Anal, Cardiac, Tracheal, (O)Esophageal, Renal and Limb) Association in babies with three or more affected parts. You can find out more about VACTERL by downloading our free information leaflets. For a hard copy, just email your address to the TOFS office.
Another group of anomalies called CHARGE Association is also connected with TOF/OA but this is less common than VACTERL.