Perspectives: Anoushka & Rohini
Hi I’m Rohini, I’m the mother of Anoushka Rohini Mistry who was born with a rare genetic illness which was in essence characterised by inflammation, particularly her lungs. I’m here to share my journey on nourishing our daughter, who was tube fed. Our struggle to feed our baby started the moment she was born. Breastfeeding was a real challenge and as we moved to formula milk we fell away from the centile chart in the “dreaded red book”. It was like falling down the rabbit hole in “Alice in Wonderland”, except we were in desperate need of the bottle that could make Anoushka grow!
Every weigh in was a source of tremendous anxiety and trauma. We went through multiple allergy tests which showed nothing and eventually we concluded at a Non IgE dairy allergy. What does Non IgE mean I hear you ask? Well the gastro consultant described it as, an allergy that doesn’t show up in the bloods. Now, I’ve just looked this up and Google says “Non-IgE-mediated food allergies are a group of disorders characterized by subacute or chronic inflammatory processes in the gut”. So, we eliminated dairy and Anoushka gained some weight and symptoms of a chronic hacking cough abated. But, 6 months on, Anoushka wasn’t growing and aged 2.5 we admitted her for ng feeding.
It was a hot August day in 2015. My husband Rajesh appealed to the gastro consultant “I think this is a respiratory issue, she is breathing fast all the time and she has a hacking cough." I interjected and said “let’s go ahead with the feeding because we need her to grow”. I was at my wits end, pregnant with our son and fearful of not being able to support Anosuhka with a newborn. How right was my husband and how right was I to be full of fear. What lay ahead was not even our worst nightmare, no one could have dreamt up the torment that lay ahead.
The Ng feeding was a disaster, Anoushka vomited non-stop and aspirated until a chest infection took hold and an x-ray revealed that there was a serious lung condition. In those moments, I so wished I had pushed for a chest x-ray before commencing with Ng feeding. It was my first lesson in listening to our gut.
Fast forward to December 2015 and Anoushka deteriorated dramatically following a lung biopsy returning home after 2 months on oxygen and with a PEG. By this point our son was 3 months old, I breastfed him whilst I tube fed our daughter. For 6 months we jumped through every hoop our dietician gave us, using every formula milk we could find and boluses of calogen to top her calories. Anoushka was now breathing at 60 a minute, she was running a marathon 24 hours a day, aged 3 and the size of a 9 month old, she needed over 1000 calories a day.
Over 6 months we watched Anoushka retch, vomit and suffer with constipation, with no growth in sight. Then one day, we hit a wall. Noah’s Ark Hospice, came in to give us respite and my husband and I went for a walk. We sat in a bakery and shared our sorrows over a cupcake. “I want to put Oatly down her tube”, I announced. “Do it” cried Rajesh and so it was, one October day in 2016. We bought Oatly cream and I pushed it through with a syringe. Anoushka stopped vomiting over night.
It was the beginning of a passionate quest to feed our beloved daughter, not just with real food but also with love.