A mother’s story 

My daughter Su Yin was born in August 2012 weighing 6lbs. From day one I had problems getting her to feed. She refused the breast and the midwives wouldn’t let me leave til she’d fed. I ended up giving her formula so I could go home. The first few weeks I had midwives ramming her face into my breast while she arched away screaming, red in the face. I ended up expressing for 8 weeks and bottle feeding til exhaustion forced me to move to formula.

At first she happily guzzled her bottles but slowly she started to thrash her head side to side, refused to drink, arched her back and cried at every feed. Sometimes she’d projectile vomit. She coughed a lot, had raspy breathing and a rattly chest. The GP told me it was nothing and the health visitors kept telling me a baby will never starve itself, if she’s not hungry she’s not hungry, and once even shrugged and said she had no magic answers.

In the end, her refusal got so bad I had to resort to spending hours a day spent in a darkened room, getting her to nap on me and inching a dummy out her mouth then trying to replace it with a bottle. I became house bound, unable to go out for fear she wouldn’t nap and miss a bottle, or would be disturbed mid-feed. Getting her to drink required complete silence and the slightest noise such as the phone ringing or a siren outside, would rouse her and my hours of attempting to get the bottle in her mouth would be wasted. I became extremely depressed. I felt trapped and unable to cope. Looking back I think I had a mental breakdown. I cried all day every day, frequently while trying to feed her. Some days I couldn’t even get out of bed.

It took several trips to the GP and lots of reading online before I diagnosed this condition to be silent reflux. The contents of her stomach were coming back up into her throat and the acid was burning her oesophagus. She’d begun to associate feeding with pain, which was why she was refusing to drink. I put her on anti reflux milk, which is thickened to prevent it being regurgitated, and her feeds improved for a week or two, then deteriorated again. The GP have us baby Gaviscon which made her so constipated we had to give her laxatives and suppositories (which made her scream with pain). It took repeated trips to the GP and eventually A&E after she refused to feed for over 8 hours before we were given medication.

Fast forward to 14 months old, and she is under a paediatric allergist (severe eczema forced the GP to refer her for allergy testing after I insisted she had a milk allergy and was fobbed off. Turns out she’s allergic to milk, nuts, banana, pear, apple, kiwi and soya. She’s still on medication and prescription formula for babies with cows milk protein allergy (CMPI). 9 months of weaning and she still refuses to eat.

On a good day she’ll have half a pouch of mango purée and a tbsp or two of instant noodles (fed with chopsticks as she refuses to eat from a spoon). Every meal or bottle requires distraction techniques and we can’t go anywhere without our phones so we can play TV shows in order to get her to drink (we get filthy looks from people in public). Her milk intake is tiny and it takes 6 goes to get enough into her. We still have to feed her while sleeping to top her up sometimes. We struggle to maintain her weight, and it’s a constantly source of worry. It’s all consuming. It’s put a massive strain on my marriage, I’ve lost touch with friends who I haven’t seen for over a year due to not being able to go out and them not understanding the situation and it’s affected my parents lives as well (they look after her while I’m at work so struggle with her feeds too).

It’s frustrating that if her silent reflux had been diagnosed early enough, along with her CMPI, she wouldn’t have behavioural issues with food and aversion to feeding. Any mum who thinks their baby may have reflux, my advice is to see your GP, do your research, ask other mums online for advice, and don’t be fobbed off by health professionals. There are brilliant support networks online. This Facebook group has been invaluable to me. Collectively, these mums know more about reflux than any GP or specialist I’ve seen. https://m.facebook.com/groups/267076970042881 but most of all… be pushy. You know your child better than anyone else. Don’t let them make you feel like a paranoid parent. And get it sorted as early as possible. Or you could end up in my situation a year down the line.

For all her issues, Su Yin is a very happy, chatty, bubbly little toddler. She’s developing well, started walking and talking, and makes me smile every single day. She’s my world.