Often OA/TOF is seen as a condition that only affects young children. Indeed, many people are under the misapprehension that once an OA is repaired, everything will return to “normal”. However, we know that is not the case and, for many people with OA/TOF, complications can continue throughout their life.
At TOFS, we are calling on the NHS to recognise OA/TOF as a lifelong health issue and to put practices and procedures in place to ensure the best care possible for those born with the condition.
You can read our recommendations for the NHS in our paper, “Towards a holistic model for the treatment of those born with Oesophageal Atresia (OA) from diagnosis to transition and adult care”.
Unfortunately, you may find that some doctors have little experience of OA/TOF and a poor understanding of any associated complications.
To help, TOFS has produced two resources with information on OA/TOF and VACTERL that you can share with your GP.
This substantial work highlights issues faced by OA/TOF adults and teens and covers areas including, respiratory, gastrointestinal, VACTERL, nutrition and dental complications amongst many others.
This handy guide provides a quick introduction to OA/TOF and some of its associated conditions.
Order your copy of “Improving health outcomes for adults born with OA/TOF and VACTERL“
OA/TOF causes both airway and gastro-oesophageal ill-health.
The combination of anatomical differences due to OA/TOF and reflux into the airways, oesophagus and oropharynx can cause a vicious circle of both respiratory and gastric symptoms.
Steroids and antibiotics to ease breathing may have worsened the patient’s gastro-oesophageal reflux. This may result in aspiration into the lungs, requiring further respiratory support and interventions.
The cycle continues with the patient becoming increasingly fatigued and with little improvement to their respiratory function.
Barrett’s oesophagus and cancer
The risk of developing Barrett’s oesophagus in patients who have had OA repair is low. The exact figure is unknown but probably in the region of 5-10%.
Chronic gastro-oesophageal reflux can cause changes in the cells of the lining of the oesophagus. This change in the cells is called Barrett’s oesophagus or columnar metaplasia.
The normal lining or the oesophagus consists of squamous cells. Squamous cells are not acid-resistant (which is why acid reflux causes inflammation of the lining).
Under the influence of long-standing acid reflux these cells change their form into columnar cells and resemble the cells lining the stomach or bowel. Columnar cells are acid-resistant.
Most people with Barrett’s oesophagus never progress beyond the first stage (intestinal metaplasia).
Consequently the risk of patients with Barrett’s developing oesophageal cancer is very low, probably less than 0.5%.
There have been a handful of cases of oesophageal cancer reported in patients who underwent OA repair in infancy. These are evenly spread between squamous cell carcinoma (which is unrelated to reflux and probably occurs spontaneously) and adenocarcinoma (which is related to reflux and Barrett’s). Such case reports have understandably caused considerable anxiety in patients who have had OA repair and their relatives.
The risk to individuals born with OA/TOF of developing oesophageal cancer is really very low indeed. Although the exact risk is unknown, and it is likely to be higher than in the general population, it will certainly be considerably less than 1 in 1000.
We have created an interactive map showing health care professionals in the UK who are known to treat adults with OA/TOF.
Did you know that TOFS maintains a library of external papers on the latest OA/TOF and VACTERL research? This can be useful when talking to medical professionals about your condition.
Resources & downloads for adults born with OA/TOF.
Our Adult Working Group are an important part of the TOFS team who each bring a unique understanding of what it is like to be born with OA/TOF.
The group have been busy working on the production of a brand-new handbook and shorter pamphlet written by Dr. Caroline Love, with the aim of bringing knowledge to medics who treat Adults born with OA/TOF.
Moving forward, the group will be looking at ways we can help educate parents as their child prepares to move to adult care and how we can better engage with adolescents in order to assist their understanding of their own condition.
If you would like join the working group or have any thoughts on future projects, please contact the TOFS office.
Published by TOFS, The TOF Book is the must have guide for anyone affected by, or caring for someone with OA/TOF.
With contributions from medical experts, the TOF Book contains chapters on every aspect of OA/TOF and VACTERL condition, from infancy to adulthood all presented in an easy-to-understand format.
Want to get more involved in helping us to give lifelong support to people with OA/TOF?
Here’s a few ways you can help…
Supporting adults with OA/TOF is part of our mission at TOFS but we need your help.
Join our adult OA/TOF working group help us look at the best ways we should deliver this support.
If you would like to get involved and join the working group, please get in touch. We would love to hear what you have to say.
Being a born with OA/TOF makes you pretty unique and people would love to hear about how it made you what you are.
You can help by sharing your story in our Chew Magazine, on social media and in the local press to help to raise awareness of the condition.
We’d love to be able to share your story too, so please tag us in to your posts. If you’d like to share your story on our website or magazine, please contact the office.