When my son Zephyr, now four, was born, he was a bouncing, happy bub. Then when my husband Clayton, 32, and I took him home he began being violently sick after feeding. Worryingly, he also started to lose weight.
At six weeks old he was diagnosed with food protein induced enterocolitis syndrome (FPIES) and suspected eosinophilic oesophagitis (EoE).
FPIES caused him to vomit and suffer from diarrhoea after eating certain foods, while EoE made his throat inflamed. Zephyr was already reacting to traces of these foods in my breast milk.
At 11 months, Zephyr underwent surgery to have a feeding tube fitted, held in place by a silicone balloon that sits inside his stomach. On the outside he has a ‘button’ where the tube is attached.
It’s been tricky, but Clayton and I have learnt how to use the feeding tube to manage any mishaps. We were still worried Zephyr would feel different from his brothers, Ezekiel, nine, and Xavier, three.
Then Clayton had a brilliant idea. ‘I’m going to get a tattoo,’ he said. ‘I’ll get a button on my stomach, just like Zephyr’s.’
Clayton got a tattoo to match his son's feeding tube site
Now, when we take a trip to the beach together, Zephyr proudly shows off his tummy.
‘Look, Daddy and I are button buddies,’ he beams.
I’ve now created a Facebook group called AU Tubie Support. It’s been incredibly helpful to share our experiences with other families with similar conditions.
Food protein induced enterocolitis syndrome (FPIES)
FPIES is a type of food allergy which affects the gastrointestinal tract. Symptoms usually occur two to six hours after eating.
It can cause violent vomiting and diarrhoea, which might include blood or mucus. Children can also become very tired and seem dehydrated.
Trigger foods often include rice, soy, milk, oats and other grains, and even meat and vegetables.