The Relentlessness of Reflux: Michelle's Story

Infant gastro-oesophageal reflux – when the stomach contents flow back into the baby’s oesophagus – is a common but poorly understood condition. Most babies will grow out of reflux by the time they’re toddlers. In some cases, however, a baby or child’s reflux leads to complications, and reflux disease is diagnosed. And for those families, reflux is very real, and very challenging.
To increase awareness of infant reflux, I spoke to Inner West Mum Michelle Caruso, whose daughter, now four years old, has suffered from reflux since birth. Michelle also volunteers for the Reflux Infants Support Association (RISA), a non-profit community group which provides support to families of infants and children with gastro-oesophageal reflux.
‘Our daughter was unsettled from the very beginning,’ Michelle says. ‘While feeding, she would often pull off screaming, which seemed to increase in frequency and severity each week.’ Michelle became concerned when her daughter began waking from naps with vomit in her bassinet. She also noticed that her daughter would cry out or scream in the middle of a nap. When her daughter was four weeks old, a GP suggested that she may have reflux but recommended waiting until she was six weeks old before beginning medication.
Two weeks later, on the day of an appointment with a paediatrician, Michelle’s daughter woke mid nap, and froze: she was choking on her reflux. ‘I tried to assist her to clear her airway,’ says Michelle. ‘Thankfully it worked, and she began breathing again. At the appointment the paediatrician watched her feed at this time and noted the reflux was quite obvious. The paediatrician prescribed a moderate dosage of reflux medication and asked us to come back in a couple of weeks.’
By three months of age, however, things had gone from bad to worse. Michelle’s daughter’s reflux was now in the severe category. The medication was doubled, now at an adult level, but still it was not controlled.
Michelle explains: ‘At five months, our daughter was vomiting at least 25 times a day and had begun to experience extreme feed refusal. On two occasions tube feeding was considered. We then saw a paediatric gastroenterologist who changed her reflux medication type. For the first time our daughter was almost pain free, stopped vomiting and was feeding better. At 7 months of age, under a new gastroenterologist, our daughter’s medication dose was increased yet again.’
Eventually an endoscopy was performed – when her daughter was 15 months old – which showed evidence of aspiration and damage to oesophagus from acid reflux as well as a hiatus hernia. ‘We were told surgery will be needed down the track to repair the hiatus hernia – it’s that, or lifelong medication.’
The impact of the reflux on Michelle’s daughter has been deep. Michelle says: ‘It affected her feeding and her speech. My daughter only learnt to chew properly at 20 months of age due to ongoing feed refusal from reflux pain. It wasn’t until 2.5 years that she began to accept a normal range of foods. Her speech was delayed. Any illnesses she picked up would cause her reflux to flare. She became anxious and clingy from all the doctors’ visits – and the pain. She remains extremely shy around others.’ She also suffers from constipation. Reflux and bowel conditions often go hand in hand, and her daughter also has a long bowel. She is treated for the chronic constipation, but this has caused toilet training delays.
How did all this affect the family? I ask. ‘It is incredibly hard to see your child suffer,’ Michelle says. ‘Babies mainly eat, sleep and poo – our daughter couldn’t do any of that without pain. The pain she endured was horrible. It was relentless, stressful, exhausting – so exhausting – suffering extreme sleep deprivation – and isolating too. It has been a very tough journey in so many ways – physically, emotionally and financially.’ (Michelle returned to work later than planned and worked fewer days to support her daughter’s needs.)
One hurdle that constantly surprised Michelle was those who doubted that there was a problem at all, or didn’t believe just how bad it was. ‘Many people do not understand the problem. This is very different to the general reflux that babies commonly experience but grow out of. I was surprised – no, bewildered – by those who actually thought it wasn’t true. After the endoscopy we finally had the proof of how severe our daughter’s reflux was and that she had reflux disease, but of course by then we just wished the specialist had found nothing.’
Michelle says she received tremendous support and advice from the Reflux Infants Support Association (RISA). ‘These are mums who have been where you are, or are where you are. They get how tired you are and will offer endless support and advice. Unfortunately not many GPs refer mums whose bubs have been diagnosed with reflux to RISA.’
Michelle is passionate about securing greater support for families with children suffering from reflux. ‘In June 2016 RISA conducted a survey to understand the impact of infant and child reflux. Among the results, 78% of respondents reported that reflux disease impacted the quality of their life with the greatest possible impact; 77% reported strain on primary relationship; and 50% had frustration in diagnosis and support. RISA is in the process of having the results formalised to inform various departments in the medical field. We are hopeful changes will come in the future to provide greater assistance for families battling reflux.’
For some general information about reflux, you can read the Raising Children reflux article:
http://raisingchildren.net.au/articles/reflux.html
To learn more about RISA or to join the group, visit:
http://www.reflux.org.au/
There are also some excellent articles about reflux on the RISA website.
If you are concerned that your child may be experiencing gastro-oesophageal reflux, please see your GP. He or she may refer you to a paediatrician or even a paediatric gastroenterologist for further investigation and management.

More articles by Ginny:
Remembering with Love: Jane’s Story
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Sleepy Heads: Surviving Sleep Deprivation in the Early Years
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