One of the lesser known (and obviously less frequent) consequences of severe gastroesophageal reflux disease (GORD) is the need to tube feed some children. Babies can learn very quickly that the act of feeding hurts and as a result will refuse to feed. Despite the notion that feeding should be instinctual, there are some instincts that take precedence, like preserving oxygen flow or avoiding pain.
I have two little boys who mean the world to both my husband and I, they are our everything and yes this sounds clichéd but I cannot imagine our life without them. They are both our little IVF miracles and we still can’t believe just how lucky we are.
It has taken me a long time to write my story down on paper, mostly because every time I think too much about it I cry. I don’t know exactly why. I do know I still feel ashamed that I didn’t realise sooner that my baby was in so much pain. I feel angry at myself for listening to doctors instead of listening to my heart. I feel guilty for letting my poor little baby cry so much and for so long because I let people convince me she was just determined or naughty or trying to control me.
As our children grow older and continue to experience food allergies and/or complications from reflux such as tube feeding, it can be hard for them to understand why they are different. There are a number of children’s books that have been written about food allergies, eosinophilic oesophagitis (EE) and feeding tubes. RISA Inc has been able to source some of these books and they are available to borrow for free from our library (for Australian RISA members).
Library title about eosinophilic oesophagitis