(27th Congress of the International Pediatric Association, Melbourne, 29 August 2013 by invitation of the Association for the Wellbeing of Children in Healthcare).

Good morning. I’m Joanne Matthews, and I’m proud to be the National President of the Reflux Infants Support Association (“RISA for short”) and mum to a severe refluxer. “Gastroesophageal Reflux Disease” is quite a mouthful so please excuse my abbreviating it to “reflux” this morning.

My daughter was tube fed for most of the first two years of her life and underwent fundoplication surgery at one year. That’s the surgery where they wrap the fundus around the lower oesophageal sphincter to control reflux – in her case that was primarily due to failure to thrive and constant aspiration. It was quite a journey and one that gave me more exposure to health care professionals than anyone would ever want – present company excepted I’m sure. While our journey was difficult, I was supported by some extraordinary doctors and allied health professionals and I would say our health care system, when it functions well, is nothing short of amazing.

Having been involved with RISA for most of that time, I’ve seen and heard lots of good and bad stories of the interaction of parents and their sick babies with health systems – both here and overseas. We’re affiliated with like organisations across the world thanks to the wonder of the interweb.

There’s a gap in the knowledge landscape of health care professionals about childhood gastrointestinal disease not only in Australia, but internationally. We know it’s an international knowledge gap because mums with reflux babies talk 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 gap exists because knowledge and technology have moved quickly and much more is known today about gastro-intestinal disease in children than was known even a few years ago. Paediatric gastroenterology is a relatively young field and what paediatric gastroenterologists and surgeons know hasn’t yet been able to find it’s way to many of those who care for very young children. Which is understandable.

But given the alarming rate of increase of atopic reactions in children, the increasing complexity of the food chain, the increasing rate of prematurity (which is a strong precondition for infant reflux) and the rising rate of reflux in babies – not to mention the extremely serious respiratory and feeding complications that often come with it – it seems strange that there has not been a move to increase the knowledge of paediatricians and neo-natologists in this area. As far as we’re aware, paediatricians are not required to do a gastro-intestinal rotation in Australia as part of their training. And therefore, that latent learning that paediatricians push back out into the health care community is not filtering back to GPs and community health nurses in the way that it ordinarily would. I know that my perspective is biased but all babies really do is feed and poo. Other than the respiratory system, what could be more important in a paediatrician’s training than the vagaries of the gastrointestinal system? And believe me a malfunctioning gastrointestinal system can impact significantly on respiration.

As a result, the stark reality is that our reflux babies are still not being routinely diagnosed and treated in a timely fashion, if at all. Rather, they are still labeled ‘naughty’ or ‘difficult’ and parents judged for lack of intestinal fortitude. And of course there is the occasional nah-sayer baying that the earth is flat – which, given the evidence, seems quite inexcusable to us.

Anecdotally, there is a correlation between the mental health of the parents and a diagnosis of reflux in the child. Both post natal depression and post traumatic stress disorder feature heavily. It doesn’t do good things to your head when you don’t sleep for a year and have to listen to screaming around the clock. Or the ongoing issues caused by very difficult toddlers and children. Kids will act out relentlessly and in extraordinary ways when they are in pain and can’t articulate it. And the result is very weary parents who are not at their best.

What I want to address today is the second point in the Charter on the Rights of Children and Young People in Healthcare Services in Australia.

It says that every child and young person has the right to express their views, be heard and taken seriously. I want to address how that can be done for infants and young children with reflux disease in particular – but the principals will be similar for unwell infants in general.

As I’m sure you know, listening to parents is the way you listen to babies.

I know it may seem obvious but parents are the ones who know their babies best and if they say there’s something wrong or the treatment’s not working, chances are there’s something wrong and the treatment’s not working. If you are really unsure that the parent’s hunch is right, ask them to document things for you. Send them away with the faces pain scale and ask them to regularly rate the facial expressions of the baby for a few days. Ask them to document the amount of sleep the child is getting – and how that sleep is achieved. Ask them to document the nature of the child’s feeding and toileting patterns or how they respond to analgesics. Ask them to video episodes. Most of us have the capacity on our phone these days and it may be very enlightening for you.

Parents will be ever so grateful for being given something practical and positive to do and they will provide you with evidence upon which you can act. Require them to be succinct. That is a reasonable request from time-poor doctors who are trying to find real evidence to make important decisions about multiple patients and parents should respect that.

Tasks like this will give parents purpose and provide some meaning to the endless, seemingly meaningless hours of trying to console 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 a paediatrician’s door.

The other thing to remember is that the parents will often, believe it or not, under-sell the situation. They don’t want to be seen as failing parenting. If you can’t feed or settle your child, you must be pretty bad at this parenting gig. Everyone else seems to be able to do it. And it’s just a question of degrees, right? All babies cry. Lots of babies are a bit fussy. So if parents aren’t coping and are asking for help they will feel like they are admitting failure and will be frightened to tell you just how bad it really is.

These babies are creating high-stress situations in their homes and the children are at risk. They are at a higher rate of risk of Shaken Baby Syndrome and indisputably at a higher risk of Sudden Infant Death Syndrome. [edit for non-medical audience]

As I said, these babies are at risk and have some common characteristics but can present very differently.

To paint you a picture: my nephew was a refluxer. As a baby, he vomited constantly and profusely. His appetite was insatiable. He rarely slept despite the best efforts of his mother, sleep school and experienced nurses. They had to have the carpets steam cleaned every two weeks for a year. He was a 99th percentile for weight – and he was inconsolable. She 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.

By contrast, my baby was also a very sick refluxer but she was tiny – less than third percentile – and didn’t vomit. She didn’t feed. Though, like my nephew she also didn’t sleep and was inconsolable.

But they both had reflux… and in their cases – both with the same causes – various intolerances, motility issues and a gaping hiatus hernia.

Kids can have this condition and LOOK healthy. They may be a good weight. They may not vomit. But they can still be in a lot of pain and driving their parents to distraction. An immature digestive system, intolerances, allergy, motility issues or structural problems can all be potential causes. And their parents will be desperate for help and for someone to believe them.

It took my sister 8 months before anyone understood the extent of the problem and realised this was something out of the ordinary. Unfortunately, that is not unusual and is often much worse.

We know reflux disease is quite common in children and even more common in infants and it’s on the rise (The best estimate I’ve found is around 8% – though the findings vary wildly – I’ve seen estimates as low as 0.01% and as high as 20%). Its symptoms are some of the most common reasons for repeated trips to the paediatrician.

My family’s stories are one thing, but the stories I hear as president of RISA are sometimes horrifying. Not just that pretty severe reflux goes undiagnosed for years, but children’s lives are being regularly put at risk.

In a regional area of NSW, it was recently bought to my attention that a 6 month old baby, who was averaging more than three blue episodes a day, was being routinely turned away from the local emergency department. The mother knew it was reflux and couldn’t get admitted for observation much less referred to a paediatrician. She was too scared to sleep on the odd occasion she could get him to sleep because, rightly, she was frightened he would have another episode and die. The mother herself was in a position to know. She was one of the first recipients of paediatric fundoplication surgery in Australia when she was three years old. Her mother, the grandmother, found us and we’ve since found her help.

Then there’s the story told by one of our RISA volunteers, who is a teacher. Long before she had reflux children of her own, she taught a young seven year old girl. She was beautifully behaved but very serious, sad and often anxious. She always complained about a stomach-ache. Ten years later our volunteer again met the child’s mother. The mother recounted her multiple trips to the GP and psychologist to find help for her daughter. At the time the various professionals had decided that her constant tummy pains were anxiety and psychological, despite the child having a history of reflux as an infant and the mother specifically asking about it as a potential cause. It was always dismissed. It was not until this child was in high school and able to now understand that other people thought she was making it up, that one night, desperate, she begged her mother to believe it was not in her head. It was not until high school that this young lady finally saw a paediatric gastroenterologist. The ensuing endoscopy revealed the ulceration, scarring and pain that she had endured. Her mother wasn’t believed so this child had to wait until she was almost an adult to be able to insist on finally being heard.

All too often gastrointestinal issues are written off as mental health issues – of either the child or the parent. It seems bizarre that medical types defer to the psychological explanation without checking a fairly obvious probably medical cause.

Again, anecdotally, it seems that child psychologists are now regularly seeing young teens presenting at Children’s Hospitals who are self-medicating with alcohol and other drugs only to discover they are suffering undiagnosed gastro-intestinal disease. And dating back to 1984, studies were being conducted that showed that around 50% of teens presenting with anorexia or bulimia were cured by the prescription of motility drugs. That is, they just needed to be able to move faecal matter in order to regain a normal appetite. We know hormones slow the bowel in pregnancy, why wouldn’t it also interfere in adolescence? From what we can see, very little is being done to help identify teens with gastro-intestinal disease at all. Anywhere around the world. As a result they self-medicate in a pretty risky fashion.

Plenty of our parents are routinely turned away from emergency departments with very sick babies – even from our children’s hospitals. These are often profoundly and chronically sick children. Mothers are lectured about trying harder to feed them, when children are refusing food in order to protect their airways, or told to let them cry it out when the child is clearly in extreme pain. And I include in this highly informed parents who are also GPs or nurses.

Even after diagnosis, 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 NJ then PEG fed for two years in total. And it’s not over. I know now, that kids in her category, only a few decades ago simply died of malnutrition.

I tell you this because, though my experience was rare and extreme for a refluxer, I need to emphasise 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 and significantly reduce their quality of life and that of their families. I don’t need to explain the extent of the danger of chronically compromised airways but also, down the track, the child can develop sensory processing disorders, chronic ENT issues and other secondary issues that are expensive to treat, are all too common, and in many cases could be averted with early intervention. Goodness only knows how many bowel, stomach or oesophageal complications or even cancer could be prevented with better understanding of the lifelong nature of gastrointestinal disease in many people.

The misconception that most babies grow out of reflux disease can be dangerous. Some do. In many others the symptoms merely change and the child in question only works out that they have inherited a reflux issue when they are old enough to recognise that the discomfort they’ve always lived with is reflux disease. 10-20% of the adult population have reflux and it is increasingly being understood as a lifelong condition.

For instance, spare a thought for the slightly older child who is still not verbal, but who is upright so their symptoms may have changed – vomiting my have reduced or ceased. Toddlers with a really short fuse, who are extremely sensitive and clingy, or disproportionately aggressive, who tend to want to sleep on their tummies and who just don’t sleep properly may also be suffering with reflux disease. The terrible twos really may be terrible for some of these kids.

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 much more likely that there is in fact under-diagnosis.

We don’t really know whether the rate of reflux in babies is increasing or we just recognise it more readily now. Probably it’s a bit of both.

Babies need advocates. Their parents are those advocates. But they are sleep-deprived, under-confident and hardly at their best when they are trying to do it.

All of this puts you in an invidious position. I just need to draw to your attention the very real difficulties facing parents of children with gastrointestinal disease. Very often, because you can’t see it, the temptation is to think its not there or its psychological. But we actually do have the medication and the technology to detect and treat it.

But we need to do this better. We need protocols for diagnosis and treatment in our hospitals and available to our community health nurses, GPs and paediatricians. We need more specific training for paediatricans and neonatologists. We need more funded paediatric gastroenterology positions in Australia. The waiting lists are ridiculous and parents are regularly flying interstate to find help. You do not want to have one of these kids and be living in Perth; or basically anywhere regional in Australia. Even the major capitals can be a problem.

Babies don’t have a voice in the health system. But they do have parents. And they also have you.

Mothers in particular are biologically tuned to know when things aren’t right with their babies. Parents are the way you include the infant in its health care. Listening to parents describe the behaviour, sleep, feeding and toileting patterns of children is how you get the best clues.

But the parents need looking after too. So when you do come across one of these families – refer them to a support organisation in your country, like RISA. You can’t raise a reflux baby without help. It’s too much. Doctors can’t be there every day offering encouragement, ideas and support. That’s where we come in.

And we stand at the ready to help all of you advocate for more funding, more research and better education to improve the situation for our kids and for you. You won’t find a more motivated group of people than those caring for children who suffer chronic pain. We’ll fight for them to the end. Which means we’ll fight for you too.

So, now you know where we are and why we’re passionate about this. Please feel free to contact me or our organisation at any time if you think we could help you advocate for sick kids. We would be utterly delighted.

If you would like to know more about infant reflux, video presentations by paediatric gastroenterologists and specialist allied health professionals are available through our website.

And an unreserved thanks to the gorgeous Anne Cutler and the Association for the Wellbeing of Children in Healthcare for their ongoing work and the invitation to be here today. I am profoundly grateful.

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