Learning to Eat

Reporter: Natalie Bonjolo

Maryanne says “she just wouldn't put anything in her mouth, so we couldn't feed her basically, she has no idea what hunger is, she doesn't have that drive” It's a basic human instinct... most people take it for granted... yet little Rebecca Reid has never felt hungry.. Never been able to eat more than the tiniest amount of food. Maryanne says “I've been at my lowest point where I've said, this is ridiculous Rebecca, I've yelled at her and said you got to do it, you got to do it” Mealtime is stressful for many parents.. For Becky's Mum Maryanne, it's impossible. “She can't cope with a lot of things, she spits them out, if she chews them up, she can't swallow them, she spits them out”

There's no physical reason why her daughter can't eat, she simply doesn't know what hunger is. Despite being a picture of good health, Becky suffers a bizarre aversion to anything associated with her mouth... including food and drink. Maryanne says “it took me two and a half years to get her to brush her teeth, she wouldn't put anything in her mouth” It's a rare condition known as oral aversion... The three year old is fed by a tube which pumps milk directly into her stomach... a laborious process she's had to endure since birth. Maryanne says “she's never known anything different, her whole life's been fed by that.

”Can you show me your tummy, your button, there, what happens there, eat, that's where you eat is it? Rebecca nods her head. Becky's inability to eat normally began as a newborn... but she's faced an uphill battle since conception. Maryanne says “she was only given a 60% chance of survival”

Becky had developed a rare birth defect... organs that should have been in her abdominal cavity were floating into her chest, hindering growth of her lungs... she had a one in ten chance of surviving the pregnancy. Maryanne says “they couldn't operate on her until she was eleven days old, she wasn't stable enough.” The operation was life saving... but the threat was far from over. “But because Rebecca was ventilated for so long and spent two and a half months in ICU she became really defensive with anything to do with her mouth.”

Becky's whole life at home has been governed by these tubes... every night; she has to be in bed by seven pm... That's when she's hooked up for her twelve hour feed.Maryanne says “oh the impact is huge, every night we have to go home to make sure she's in bed by seven, whether she wants to go to bed at seven o'clock or not.” Becky starts school soon, and Maryanne desperately wants her daughter to be like other children. So the family are about to embark on a new challenge... teaching little Becky how to recognise hunger.

It's more difficult than it sounds... and it'll mean the family has to fly to the United States, where Becky can attend a specialist feeding program at this children's clinic in Virginia. Maryanne says “it's very frustrating at times when I feel like why should we have to travel so far for something that seems so simple and it can get me down a lot, but she's my daughter, so you just keep going don't you, you do whatever you got to do for your kids.”

“So we're going to fill that belly up right with hotdog, just like you filled it up with chips at snack.” Polly Tarbell, a paediatric pathologist at the American centre... specialises in treating kids just like Becky. “These children tend to be hypersensitive in their mouth because they haven't used their mouths the proper way.”Polly says “so Jacob is really good at moving the food around in his mouth and putting it on his teeth for chewing aren't you Jacob.”

“The first day that Rebecca arrives I will be assessing her oral motor status, how she's able to move her mouth around, can she move her tongue appropriately.” Polly's optimistic about Becky's chances. “She knows what hunger is, it's just been, she's inexperienced in reading those cues”

A drop in blood sugar level sends a message to the brain to say we're running on empty. The brain then sends a signal to the stomach...that triggers what most of us know as 'hanger pangs'. A signal Becky doesn't recognize because her stomach's always has been filled by a tube...so the first step is to ween her off it.

Polly says “One of the ways we do that is to switch a child from night feeds over to daytime boluses or meals and so we would divide that six hundred calories over three or four meals during the day” The feeding program is intensive.. Every day for two weeks, children and their parents - are supervised very closely... it's no picnic. Polly says “we are going to ask Rebecca to do things that she doesn't necessarily want to do and so it may not be on her agenda but it's on our agenda.” It's not cheap either... the Reid family is currently fundraising to get the ten thousand dollars needed to send Becky to the clinic.. they're told it'll be money well spent.

Polly says “our program is at least seventy five to eighty percent accurate or successful there are very few kids out of the 250 that have come to the program, probably less than five fully weaned from their tube, made no progress.” Maryanne says “the day we can pull her tube out, get rid of the pump and it will all be over, that's what we're looking forward to.” ...And Maryanne's hoping Becky's next birthday, will be celebrated like any other four year old's. “She keeps telling me for her fourth birthday she's going to have a pink birthday cake and she keeps telling me she's going to eat it and that's what I want her to do, that would be the best present yeah.”

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