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TOFS Awareness Week 2024

OA/TOF Information for Healthcare Professionals

"Lifelong follow up is absolutely essential."

Prof. Paul Losty

MD FRCSI FRCS(Eng) FRCS(Ed) FRCS(Paed) 

Tracheo-oesophageal fistula (TOF) with oesophageal atresia (OA) is seen in about 1 in 3,500 births. The term ‘TOF’ has become widely used although OA/TOF is more accurate.

Many GPs may only see one or two TOF children in a lifetime of practice and parents are reassured when GPs are keen to learn more about OA/TOF.

TOFS does not offer medical support but we do seek to share our membership’s huge practical knowledge of living with the TOF condition. We actively support healthcare professionals with their own OA/TOF research and maintain a repository of relevant external research papers.

Resources for healthcare professionals

Read the Adult OA/TOF Management Handbook

With this handbook, we hope that we can fill the knowledge gap for OA/TOF and help you understand, treat and signpost treatment to the appropriate specialist when needed. 

Read the Adult OA/TOF Management Handbook

Access our library for healthcare professionals

We are happy to offer healthcare professionals free access to our library of useful guides and a free digital copy of both “The TOF Book” and “The Soft Food Recipe Book“. 

Simply request access to the library here.

Poster for new parents

Display our poster to help signpost new parents of OA/TOF children to the support that is available via TOFS.

Download a copy here or contact us to request an A3 printed copy.

Join TOFS for Free

Join over 150 medical professionals from around the world and help support our mission to give lifelong support to those born with OA/TOF.

GIRFT - Read our recommendations to the NHS on how OA treatment can be improved

TOFS have issued a position paper aimed at ensuring consistent lifelong multi-disciplinary care for people born with OA regardless of their age, or where they live in the UK.

Read more…

Read the research

We maintain a wide selection of research on the treatment of OA/TOF and associated medical issues.

Access the research library

Download the guide

TOFS has produced an guide on improving health outcomes for adults born with OA/TOF and VACTERL.

Get our books for free.

Common Issues

GPs should be aware of the following common issues that may present themselves when treating a patient born with OA/TOF.

The TOF cough

Children with OA/TOF often have a loud, barking cough, known as the “TOF cough”. It’s caused by a floppiness (tracheomalacia) of part of the trachea (windpipe) and can get worse when a child has a cold or other respiratory problems. 

Whilst it can sound alarming, it doesn’t necessarily mean the child is ill.

Read more about Tracheomalacia and the TOF cough.

Swallowing and getting food stuck​

Children with OA/TOF often have abnormal swallowing mechanisms and will have to learn to cope with their particular feeding problems. 

Some children will need to receive tube feeding to make sure they stay healthy. 

At first, many will need a special diet, but most will (with their support of their school) cope with school dinners or a packed lunch.

Read more about strictures.

Respiratory problems and chest infections​

Babies with OA/TOF can experience short periods when they find it hard to breathe, due to a floppy trachea. This is most likely to happen when a child is breathing heavily, for example when coughing or crying. Children usually grow out of this by the age of two and then only a minority of babies suffer severely.

Babies may also experience respiratory problems such as asthma and chest infections. These are treated with inhalers or antibiotic treatments.

Read more about respiratory problems and chest infections.

Reflux

Children with OA/TOF often experience gastro-oesophageal reflux (GOR).

This is where the acidic stomach contents pass back into the lower oesophagus, causing pain and often reluctance to eat.

Reflux can usually be treated using a combination of practical measures and prescribed medications. Occasionally it requires further surgery.

Read more about gastro-oesophageal reflux.

Long term outlook

The results of long term follow-up studies are reassuring. Whilst complications are at their worst during the first two years, they become less common after five. By early adolescence, most patients with oesophageal atresia have learned to cope with the disordered motility of their oesophagus and can live a near-normal lifestyle.

Children should however be followed up until the age of 16 years and a well defined care path should be established to assist with the transition to adult care.