Being born with any medical condition can make you feel different to other people and it’s only natural to have questions about your condition and how it may affect you going forward. On this page you will find information, videos and stories of other people who were born with OA/TOF and we hope you find them helpful.
It’s important to know that we are all individuals and your experience of OA/TOF may differ from someone else’s. Many people find that OA/TOF has little impact on their life and any issues that do arise can be easily managed. Others find ongoing medical support is required.
But regardless of how you are affected by your condition, we are here to support you.
As you move in to adult care, you may find that doctors have little understanding of your condition.
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“
Healthcare professionals can also get a their own digital copy of The TOF Book for free. Just send us their details or ask them to complete the library access form and we will happy to send them a copy.
Read Matilda’s story about what is what like being a teenager with OA/TOF.
If you would like to chat to other young people with OA/TOF please get in touch and we will try our best to match you up.
You will no doubt have many questions about your OA/TOF. We will try to answer a few of them here.
OA stands for Oesophageal Atresia (where your food tube stops between your mouth and your stomach.
TOF stands for Tracheo-Oesophageal Fistula which is where the food tube coming up from the stomach connects to your airway instead of going all the way up to your mouth.
It is possible to have one condition without the other but most have OA with TOF.
Many people just call the whole thing “TOF” which is confusing and wrong.
When you’re speaking to a doctor you should say you were born with OA/TOF (if you have both conditions).
As we don’t know the cause of OA/TOF it is hard to say. But nothing you, or your parents did contributed to you having the condition.
OA/TOF is quite rare but about 1 in every 3,500 babies are born with it, so you are not alone.
OA/TOF is a lifelong condition which affects people in different ways. Some people find that their symptoms get easier as they grow while others may find they need ongoing medical support.
Yes. Any changes to your medicines should be discussed with your health care team.
Yes, joining TOFS gives you access to our support network, our magazine and invitations to talks and events. TOFS is free to join and you can find out more info here.
There are many ways to support us (see the Get Involved section on this page for more info).
You can help raise awareness of the condition by sharing our news and posts on social media. You can also help to raise funds by taking part in events or holding your own.
We have some fundraising ideas here but we would love to hear yours too.
You can speak to your parent or carer and ask them to contact your consultant.
TOFS are also able to put you in touch with other young people if you’d like to talk to someone who is in a similar situation – just send us a message.
If you have other concerns or worries, there are people you can talk to confidentially who can help:
YoungMinds – If you’d like to talk about your feelings or mental health.
Papyrus – If you are having suicidal thoughts or feeling like you can’t cope with life.
NHS – Find advice and support about mental health for children, teenagers, students and parents.
Anyone who has had surgery to repair TOF/OA will, to a lesser or greater extent, have one or more reminders of it: scars.
It may seem counter intuitive to say it, but scars are good. It means that surgery on the initial problem has been carried out and the patient has lived to tell the tale.
As 10-year-old VACTERL Harriet has so aptly put it, “Scars … proof that you’ve been hurt but got better.”
But what actually are scars? Why do they differ in appearance and what can we do if they start to give problems?
Dr Caroline Love, Associate Specialist in Dermatology at York Teaching Hospitals and herself an Adult TOF, sheds light on the subject.
A scar is an area of fibrous tissue that replaces normal skin after injury and surgery.
Scars are made of the same material as normal skin (collagen) but are never as strong as normal skin. After surgery, the scar is only 10% as strong as normal skin and only ever returns to a maximum 80% of full strength over time. Scars are also less able to deal with sunlight, and do not have any sweat glands or hairs within them.
When a scar is made in surgery, it is because the surgery has cut through the nerves, blood vessels and other parts of the skin. These take up to two years to adapt to the changes the surgery has brought about and reach the final result. Even after this time, the area round the scar may remain numb, itchy or tight.
Whilst a scar is never the same as normal skin, there are also some common abnormalities and problems scars can develop.
Hypertrophic scars
These are thickened scars, caused when the surgery wound is under strain. They occur within four to eight weeks of surgery, and the scar is more raised and thicker than usual. These settle with time, and are not a cause for concern.
Keloid scars
These are more serious forms of excessive scarring. Overgrowth of collagen causes firm, raised, thick growths that can extend outside of the original scar site and can be raised from the skin. These can be itchy and painful, as well as unsightly. However, they are still harmless skin changes and not dangerous.
They are most common in young people, especially over the chest, back and upper arms, and more common in darker skinned people.
There are different treatments available to try to flatten the scars and reduce the itch.
Indented scars
These commonly occur after chest drain procedures, gastrostomy removal and even regular TOF/OA repair. The scar is dented in from the regular skin surface, and can be just an aesthetic issue, but can also be a site for rashes, candida infection and bacterial infection, particularly the tube scars, as sweat etc can collect in them, causing skin irritation and breakdown.
These can be treated surgically, with surgical release of the tethering binding the scar down, but this can re-form.
Careful drying of the scar can prevent rashes, but if infections occur, then treatment depends on the cause.
Up to now, you will be under the care of the paediatric team in your hospital. But, everything changes once when you reach 16 and you are discharged by your consultant. This basically means that from now on, you will need to visit an adult hospital.
Exactly what type of care you receive as an adult can depend on a lot of things including your personal health circumstances, your current healthcare team and even where you live.
As a young adult with OA/TOF, you should be aware of the importance of ongoing follow-up care and always report any changes in your symptoms to a doctor. But, 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.
Read our recommendations for the NHS on the need for consistent lifelong multi-disciplinary care for people born with Oesophageal Atresia (#OA) regardless of their age, or where they live in the UK.
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.
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…
Join us and help us decide how the charity is run.
Supporting teens with OA/TOF is part of our mission at TOFS but we need your help.
Join our young adult 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 teen with OA/TOF makes you pretty unique and people would love to hear about how it made you what you are.
Share your story on social media and help to raise awareness of the condition. (You should ask your parents permission first though.)
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, please get in touch.
