Parents of reflux babies call for earlier diagnosis and more support
When you think of reflux, you might imagine a baby who is a little restless, perhaps who vomits sometimes, but for many new parents, reflux means no more than an hour's sleep at a stretch and a baby who spends much of each day screaming in pain.
Maddy Black, from the New South Wales Mid North Coast, is a mother of two children who have been diagnosed with reflux.
Her youngest is one and is connected to a feeding tube attached to his stomach for most of each day to ensure he receives enough nutrition.
Ms Black said Felix's early months were a very frightening time and there where episodes when he struggled to breathe due to reflux blocking his airway.
"I just felt like I could not keep him hydrated, I could not keep him safe and I was just terrified all the time, syringing tiny bits of fluid into him to try and keep him going, but he would just vomit it out and we kept ending up in hospital," she said.
"It's really upsetting because, as a parent, the thing you really want to do is feed your child and keep them safe, and I just felt like a bit of a failure — I couldn't even feed my child."
"We'd try everything, I even tried wrapping up a bottle in wrapping paper in a desperate attempt to get it look like something other than a bottle, but he'd see it coming and he'd just scream and cry and arch and not let it anywhere near him."
Ms Black said day-to-day life continued to require constant vigilance, particularly managing the feeding tube, and all aspects of their family life had been affected.
"You get no sleep, but you still have to function, I feel like I take half a hospital every time we leave the house and going on a holiday just sounds too hard just because of the logistics and the financial impact is huge as well," she said.
Ms Black said, while caring for Felix, she also needed to look after her eldest daughter, three-year-old Molly, who was diagnosed with reflux when she was only a month old.
"She ended up in hospital with 'failure to thrive', a very unhappy little baby," she said.
Support for families
The Reflux Infants Support Association is an organisation which was set up to help affected families and provide information and support.
According to the association, reflux disease, where stomach contents flow back into the oesophagus, affects up to 8 percent of children and a much higher percentage of infants — some estimates put it as high as one in five babies.
Joanne Matthews, from Sydney, has been heavily involved with the association since 2012 and said, despite the prevalence of reflux, it was often very hard for parents to receive adequate medical or emotional support and many cases remained undiagnosed.
Failure to thrive
Ms Matthews first became involved with the Reflux Infants Support Association when, as a new mother, her daughter Charlotte was diagnosed with severe reflux.
"It does feel a lot like in the beginning that you are just failing as a parent, because nothing you do, or any advice you are given to throw at normal problems, like feeding or settling, just don't work," she said.
"All you really need to be able to do as a new parent is settle the baby, feed it and change its nappy and almost all those things are virtually impossible with one of these babies if they are severely affected."
Feeding became so painful for Charlotte as a baby that she eventually refused to eat at all and kept losing weight.
"We were forced down a path that led to tube feeding by about six months," Ms Matthews said.
"A general fallacy exists that a baby won't starve themselves — that if they are hungry enough they will eat — is false.
'"In these cases the most important bodily function that exists for a baby is breathing, and if you can imagine that refluxate, vomit, is coming back up into the throat, what they are doing is pulling away from feeding to protect their airway, and their capacity to breathe.
"They feel like they are drowning, which effectively they are."
Ms Matthews said managing Charlotte's health was stressful and exhausting.
"Charlotte had to be held upright to sleep, we couldn't put her down and she would sleep in bouts of about 45 minutes and it would take 45 minutes to an hour to get her down," she said.
"Going out with her would require me to take about four or five changes of clothing for her, a change of clothes for me, a change of car seat cover, all the medical equipment I needed to pump feed her and we burnt out a washing machine in a year, because it just went around the clock."
"I was treated for depression and anxiety and the GP said it's actually not classic post-natal depression, it's actually exhaustion."
Charlotte is now much better, but needed to work with a speech therapist to learn how to eat, starting with very small amounts of food.
Her younger sister, Elizabeth, was also diagnosed with severe reflux as a baby, but fortunately her early diagnosis and the fine-tuned management of her symptoms meant her feeding problems did not become as severe as Charlotte's.
Survey highlights the impact on parents
Ms Matthews said many parents were walking a similar path and there was a need for better diagnostic guidelines for infant reflux and improved emotional and psychological support for parents.
She said that need was highlighted by the results of a recent survey conducted by the Reflux Infants Support Association.
The survey questioned more than 500 parents about their experience caring for an infant with gastro-oesophageal reflux disease in the first 12 months of life.
Ms Matthews said the findings were concerning.
"Twenty per cent of them decided they would never have another child, it was just too difficult," she said.
"A huge number, around 60 per cent, put it in the category of a nine, or 10 out of 10, in terms of the effect on their life of managing one of these children and there was evidence of financial stress, marital stress."
The survey also found 29 per cent of the parents surveyed had a diagnosis of post-natal depression or anxiety, compared with a prevalence of one in 10 in the general population.
Three out of four parents surveyed slept their baby upright and a quarter had visited a hospital Emergency Department two or more times for their child's condition.
Ms Matthews said 40 per cent of parents also reported that the health professionals caring for their child did not adequately support them nor did they have a good understanding of reflux disease and its complications.
"There's definitely a delay in diagnosis, and a number of practitioners do respond with 'You'll be OK, that's just normal behaviour', with no way of really quantifying the difference between what is normal behaviour and what is absolutely not normal behaviour, and unfortunately the babies are put at risk fairly often and the parent's health is put at risk as well," she said.
"I know of some terrible stories in regional areas of NSW in particular of babies being repeatedly being taken into emergency departments having 'blue episodes' from reflux, where there is a family history of reflux, where the mother has undergone the surgery as a baby herself, and still just repeatedly being turned away."
Paediatrician says GPs need more education on infant reflux
Jonny Taitz, a paediatrician based in Sydney, said he often saw cases where infant reflux had remained undiagnosed for many months, which caused flow-on problems.
"So the parents often feel unheard and are left to feel guilty and disempowered," Dr Taitz said.
"It's a difficult area because there is no specific diagnostic test, so it's a question of sitting down and taking the time and looking at the full history and making the diagnosis.
"Many inexperienced practitioners often think because a baby is gaining weight that can't be reflux disease, when, for example, that can often very typically be the case."
"So I think there needs to be a lot more education about what infantile reflux looks like and what it doesn't look like and I think that will help particularly GPs who don't have a lot of experience with young babies — they tend to be quite dismissive."
Dr Taitz said a delay in diagnosis of infant reflux could often cause further health problems for young children, including feeding and speech issues.
"Typically what I see is undiagnosed, or under-treated reflux at seven or eight months of age, and invariably I have to use a feeding specialist because that baby has developed oral aversion," he said.
"They are so used to being in pain and then they feed, which relieves the pain temporarily, then that causes acid to reproduce and then causes pain," he said.
"Babies aren't silly, they very quickly realise that every time they feed it's causing them pain, and they will often stop feeding. And I often see speech delay because of all the oral issues associated with reflux.
"So it's not a diagnosis that should be missed and I don't think babies should be in pain."
Parents urged not to give up hope
Joanne Matthews said after a long road for her family, including pursuing a number of alternative therapies, things had now vastly improved for her daughters.
"It's been a long road but they are much better, my eldest, Charlotte, was still heavily medicated at four years old but we did a lot of work to try and heal her gut using some natural methods and she is a surprisingly, amazing, intelligent, thriving, normal, utterly engaged in the community, six-year-old," she said.
But Ms Matthews urged other parents still in the midst of an infant reflux struggle, not to give up.
"Pursue a proper diagnosis, unfortunately it is the case that many, many GPs don't know much about this disease, so it's important to write down the nature of the symptoms and take that with you."
"I would say don't give up, if it means you need to go from GP to GP, go from GP to GP, your baby can't speak for themselves, you have to speak for them."
Maddy Black also urged other parents of a baby with severe reflux, especially those in regional areas, to reach out.
"Felix is starting to eat orally now, which I couldn't have even imagined a few months ago — it's really wonderful to see him making great progress," she said.
"You just really need to get that support of other parents who have been through it before because their advice will just be of so much value to you.
"You also need to find a health professional who knows about reflux. There are not that many out there who are really knowledgeable about that and really supportive, so once you find a good health professional, you just hang onto them for dear life."
First posted about 4 hours ago