As your babies grows, you may continue to experience ongoing medical issues. Some of which may require hospital attendance. Of course, each child is unique, and some babies with OA/TOF experience no further problems.
“We were at the hospital almost every other week for appointments.”
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.
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.
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.
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.
As OA/TOF is rare, you may find that your GP or health visitor has little understanding of the condition. Indeed, many GPs may only see one or two OA/TOF children in a lifetime of practice.
As a parent or carer, learning as much as you can about the condition will come in useful when dealing with some medical professionals.
You can also refer your healthcare team to contact TOFS. We offer free digital downloads of our books and publications for professionals and free educational events. We also maintain a library of external OA/TOF research and videos covering a wide range of associated issues. We are more than happy to help medical professionals gain a better understanding of OA/TOF.
Watch Dr Kamran Ahmed’s talk on how parents can get a better service from their GP.
