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The teenage years

It is quite normal for your teenager to have a low level of interest in their own condition. Most information on OA/TOF is aimed at new parents and may not be relevant to your teen. This is something we are working on addressing. 

As well as our page for teens with OA/TOF, we are also planning more age appropriate content to help them navigate this this stage of their life.

Moving to adult care

Your child will currently be under the care of the paediatric team in your hospital.

However, everything changes once they reach the age of 16. Your consultant will discharge them and they will now need to visit an adult hospital.

Exactly how this transition is managed (if at all) and the type of care received as an adult OA/TOF can depend on a lot of things including their personal health circumstances, their current healthcare team and even where you live.

For many, being discharged by their consultant can be the start of a whole new battle with new doctors who have no experience of OA/TOF or your child. After all, we understand that this is lifelong condition and being discharged does not equal being cured.

Your teenager should be aware of the importance of ongoing follow-up care and always report any changes in your symptoms to a doctor. However, most OA/TOFs do not have any contact with hospital services beyond childhood, and even when they have symptoms, one-third of adults do not seek medical advice.

We don’t think this is good enough.

At TOFS, we are calling on the NHS to implement a nationwide program to help teenagers move into adult care. We believe a comprehensive and coordinated programme should be in place to improve the OA health knowledge and self-management skills of young adults.

Adult follow-up is important, and a lifelong surveillance programme requires engagement with relevant adult services to establish centres for adult care. At TOFS, we are aware of inadequate / non-integrated care for adult patients with ongoing more severe morbidities and the absence of a surveillance programme for all adults born with OA.

You can read about what we want to achieve in our position paper and you can help us raise our profile by sharing our plan with your consultant and medical team, joining us and getting involved.

OA/TOF transition clinic

One place which is doing things the right way is the Royal Manchester Children’s Hospital who have started a transition clinic for OA/TOF patients in the 16 to 18 age group. Read their story here.

Long term outlook

Although this may seem strange, relatively little is known for certain about the long term health outlook for adults born with oesophageal atresia and/or tracheo-oesophageal fistula.

The reasons for this uncertainty are complex:

  • Oesophageal atresia is rare (in the UK only around 150 babies are born with OA/TOF each year).

  • The North American surgeon Cameron Haight performed the first successful single stage repair in 1941. The first success in the UK came a few years later. 

  • Although nearly all babies with oesophageal atresia survive now, survival rates in the last century were considerably lower.

Only comparatively recently has it become clear that, whilst most OA/TOF patients do well, a significant minority experience chronic health problems which continue into adult life.

Long term outcome studies require good patient records with careful long term follow up. They require a patient registry. They are very expensive to run, which is important in an era where health care spending is tightly regulated. 

In this section we highlight some of the long term complications that children and families might encounter as they grow.

I was a Teenage TOF!

Read Matilda’s story about what is what like being a teenager with OA/TOF.

Ongoing issues

Some born with OA/TOF may continue to experience some issues throughout their life. Some of these issues may include:

Respiratory problems

Cough and lower respiratory tract infections.

The prevalence of chronic cough into adulthood for OA/TOF patients varies between studies from 16 to 40%.

Wheeze, asthma and allergies

Asthma is diagnosed significantly more commonly than in the normal population. Overall, it appears to be diagnosed in up to 25% of children with OA/TOF.

Lung function

A number of centres have looked at lung function in children and adults born with OA/TOF. Restrictive lung problems (i.e. reduced lung volumes) seem more common than problems with obstruction to airflow out of the lungs.

Chest wall deformities

Having a chest wall abnormality as a consequence of congenital vertebral abnormalities or previous treatment for OA/TOF can impair lung function.

Gastrointestinal and feeding problems

Gastro-oesophageal reflux disease (GORD)

Gastro-oesophageal reflux is a cause of significant ill health in adults born with OA/TOF.

Dysphagia (difficulty swallowing)

Oesophageal peristalsis is abnormal in 75-100% of children and adults with OA/TOF. Many need to eat slowly, drink plenty with meals or avoid particular foods. There are no reports of difficulty swallowing liquids.

Oesophageal strictures

Oesophageal strictures occur in 6-40% of patients following oesophageal atresia surgery. They are more likely to remain troublesome when reflux is present.

Would you like more information?

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.