4th January 2018

Raising Awareness

Greg Johnston

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TOF Awareness Week

So… here is a question for you – do you know what a TOF is?
You probably don’t, as even though 1 in every 3500 babies is born a TOF baby it is a widely unheard of condition. It is a condition which Evie had, and she needed an operation within hours of being born to save her life…
This week is ‘TOF awareness week’ so let’s change something – let’s tell EVERYONE! Every day there are 350,000 babies born around the world, meaning there are 100 babies born each day with a TOF.
The condition is not down to any particular reason, it just happens sometimes during the very early stages of pregnancy – so the more people know about this condition, the more prepared parents can be if their baby is born a TOF. We certainly weren’t prepared it…
The video below explains in detail why the condition is so dangerous, and how the incredible surgeons fix the problem. But to simply explain…
– A baby born a TOF can not swallow.
– Their oesophagus ends in a blind pouch, so anything they try to swallow can come back and go into their lungs down their trachea.
– The babies trachea has a connection to their stomach, so when they are born they can’t breathe properly as they breath both into their lungs and their stomach.
– Even after the repair surgery TOF children need a lifetime of operations to keep stretching their oesophagus and strengthening it.
– There are many complications and it can lead to a lifetime of challenges to eat.
– Some children, like Evie, can’t be repaired and need to be fed through a tube while they grow so their oesophagus can be re-connected.
– In even rarer cases children have a procedure called an oesophagostomy which means they can swallow safely in the meantime without choking…
A few months ago we met a lovely woman, Maria, whose son was born a TOF over 20 years ago. The way she spoke of her experience struck such a chord with the experience we had… so in 20 years nothing has changed.
So lets do something about it. PLEASE SHARE this page!! 
It is so simple to press share – ask yourself, and your friends – Do you know what a TOF is?