Welcome to the Reflux Infants Support Association’s inaugural conference. “Gastroesophageal Reflux Disease” is quite a mouthful so please excuse the “reflux” abbreviation.
I’m Joanne Matthews, and I’m proud to be the National President of this wonderful organisation. We started in 1982 as the less than glamorous “Vomiting Infants Support Association” but the mission’s pretty much remained the same – to help parents deal with the hell-on-earth caused by a child born with severe gastro-intestinal issues. We’ve always been exclusively run by volunteers and almost entirely funded by memberships. And now we’re branching out a bit by trying to help the experts bring their knowledge and wisdom to you – the front line in care of infants and children. I cannot thank you enough for your attendance. We really believe it will make a difference to the lives of thousands of families.
Today’s event has come about because of the drive and dedication of about eight volunteers – mums of kids who’ve been pretty sick with reflux. It is the brain-child of Dr Naomi Farragher aided and abetted by Rebecca Fletcher (who it must be said did much of the organising during a six week stint of enforced bed-rest in hospital). Thanks also to Bianca Willis, Jess Donaldson, Chrissy Nash, Tania Deller and Lauren Calvert and the extra volunteers here today. Thanks also to their long-suffering, wonderful husbands who prepared their own egg on toast for dinner, poured mummy a glass of wine and let us get on with organising today.
Today’s conference aims to fill a gap in the knowledge landscape of health care professionals not only in Brisbane or Australia, but internationally. We know it’s an international knowledge gap because mummies with reflux bubbies talk – a lot – usually in the middle of the night, in the dark, on social media, from all corners of the globe, in order to stay sane. We know what we each go through and how little is universally known about this condition.
In part, this knowledge gap exists because knowledge and technology move more quickly now than they ever have before and it’s simply hard to keep up. Much more is known today about gastro-intestinal disease in children than was known even a few years ago. And that knowledge has had profound effects on the possibilities for the way these kids can be managed. At long last sick babies are being diagnosed and treated rather than being labelled ‘naughty’ and their parents offered support rather than being told to ‘suck it up and stop whinging’.
We need to remember that it only became possible to perform endoscopy on children in the last 20 or so years to see what was really going on and as a consequence medications, treatment options and even surgery options have been developed. Profound advancements have been made extremely quickly and these need to be disseminated.
Lots of people – in the general and medical community – don’t know what infant reflux is, how common it is or how significant it can be.
I did. But I didn’t recognise it.
My nephew was a refluxer. As a baby, he vomited more than any child I’ve ever seen. His appetite was insatiable. In the rare event he wasn’t feeding, he was redecorating my sister’s home with his gastro-intestinal pyrotechnics. My sister had the carpets steam cleaned every two weeks for a year. It was revolting. You could smell the house from the street. He was a big boy – 99th percentile for weight – and he screamed like a stuck pig. She only got help at eight months when a local GP insisted on an appointment for them with a paediatric gastroenterologist. A scope determined he had a horribly ulcerated oesophagus and gaping hiatus hernia. Seeing as we thought it was hereditary and came from the father (i.e. the OTHER side of the family), I thought I was in the clear.
So when my tiny little, less than third percentile baby was born, I didn’t really get it. She didn’t vomit. She didn’t sleep. She didn’t feed. She could poo across the nursery and required a mop and bucket at change time; but still I had no idea. Things deteriorated pretty rapidly once we got home from hospital and when my sister held her for the first time she was convinced she had reflux. She arched like a gymnast, was always uncomfortable and screaming, so even if it wasn’t reflux, something was definitely up.
But here’s the point. She was tiny. My nephew was huge. She refused to feed. He could’ve been Australia’s youngest prize eater. She didn’t vomit. He could redecorate a shopping centre in less than a few minutes and frequently did.
But they both had reflux… and in their cases – both with the same cause – various intolerances, motility issues and a gaping hiatus hernia. But as you’ll hear today, not only the presentation but the causes can vary widely.
Kids can LOOK healthy. They may be a good weight. They may not vomit. Sometimes, even with a less-acidic gut, the kid will still be so uncomfortable and nauseous that they will have feeding and settling issues presumably without the extent of burning that another child might have.
And reflux is probably better described as a symptom rather than a diagnosis in and of itself. An immature digestive system, intolerances, allergy, motility issues or structural problems can all be potential causes – and you’ll learn about how to recognise them today. In many ways, “reflux” is just the catch-all word for kids with gut issues.
And their parents will be desperate for help and for you to just believe them.
We know reflux disease is quite common in children and even more common in infants, and its symptoms are one of the most common reasons for repeated trips to the paediatrician.
You will hear today from some of the most dedicated and experienced professionals working in this area in Australia today. Brisbane is spoiled with riches in paediatric gastroenterology and the allied health professionals supporting parents with sick babies. We can only thank them for their generosity in being here today. And to remind you that no one health professional will adequately be able to help a child who is very sick with reflux.
This is tricky stuff. Effective treatment requires a multi-disciplinary approach delivered with the parents of the child. There is much to be learned from the allied health professionals who will speak today – with no disrespect whatsoever to the paediatric gastros who are clearly expert in the area.
But I want to remind you that parents really are your greatest resource in terms of diagnosis and treatment. Work with them. Use them to document symptoms, implement your treatment plans and evaluate their effectiveness. They will be ever so grateful for being given something practical and positive to do. It will give them strength, purpose and provide some meaning to the endless, seemingly meaningless, hours of consoling an inconsolable child. These people are at their wits end and they’ve tried every sensible thing they can think of before they end up at your door. Please believe them.
Of course you should check in with the parents about their mental state. They are obviously susceptible to depression and anxiety under the circumstances. But remember too that your offer of help for them won’t be heard unless they understand that you are doing something for them in addition to helping their child. They are not concerned about themselves. They are concerned about their child. If they feel you are writing off their child’s symptoms as parental PND without helping their baby, neither issue will be resolved.
Because of the gap in knowledge, it can take a very long time for parents to get a diagnosis. You may very well be their third or fourth medical professional. They will be physically, emotionally and mentally exhausted by the time they find you.
Even after diagnosis, and in my case that came quite quickly, it’s a really tough road. I had a really sick kid. What I described to you earlier didn’t get better. She was 24 hour pump fed for several months while we waited for anti-reflux surgery and she was NG then PEG fed for two years in total. I know now, that kids in her category, only a few decades ago, were not only categorised as “Failure to Thrive”, they simply died of malnutrition.
I tell you this because, though my experience was rare and extreme, you need to know how serious it can be. Kids in Australia today are not dying of malnutrition, but there are other serious complications from reflux that put kids lives in danger. Moreover, down the track, the child can develop sensory processing disorders, chronic ENT issues and other secondary issues you’ll hear about today.
But I still say we had an easier time than those who have to battle for years for diagnosis or any kind of help. Many parents of these infants report sleep averages of around four, one-hour snippets of sleep per night, often for periods of longer than a year. That kind of sleep deprivation is hard to get your head around. The baby might not be screaming that whole time, but what the lack of sleep demonstrates is the extraordinary lengths parents have to go to, just to manage the child.
And spare a thought for the slightly older child who is still not verbal, but who is upright and has stopped spitting up. Toddlers with a really short fuse, who are extremely sensitive and clingy, who tend to want to sleep on their tummies and who just don’t sleep properly may also be suffering with reflux disease. Given its prevalence, it may be prudent to ask about their history as infants and put into action some of what you’ll learn today for slightly older children too.
We know that this is a relatively new and sometimes contentious area of medicine and health care. We know that there are ample accusations of over-diagnosis. But from what we see, we think it more likely that there is under-diagnosis.
Of course rates are increasing! We didn’t know before what we know now about childhood gastrointestinal disease. It’s the same as playing spotto with a 6 year old. I’d never noticed how many yellow cars there are on the road until I started looking for them. But they’re definitely there, in surprising numbers, and I suspect they always have been.
Same with infant reflux. It’s not new. It’s just that we know more about it.
So don’t worry about the rates. Just deal with the kid in front of you. Because at the end of the day, there are too many people who still don’t get it and continue to believe, against all the cartography, that the earth is flat.
The best chance we have of better outcomes for these kids is mutual respect, healthy debate and vigorous education.
I need to wholeheartedly thank you for your attendance today; in recognizing the need to know more and giving up your Saturday to find out. There is great generosity of spirit, humility and wisdom in that decision and we humbly thank you for it.
And so I welcome you to RISA’s inaugural paediatric reflux conference.
Here Endeth the Sermon. Thank you for your indulgence. I’m very passionate about this issue and this rare and valuable opportunity.
Written by Joanne Matthews
Published May 2013