A MUM has revealed her 12-year-old girl is at risk of organ failure after her weight plummeted to just four stone – due to a crippling phobia of EATING.
Grace Daw has lived with a fear of choking her whole life and struggles to eat anything outside her unusual diet of crisps, ice-cream and jalapenos.
Devastated mum Janine, 48, said each mouthful can take up to 40 minutes to eat and anything which requires chewing will see Grace rush to the toilet to vomit.
She is fed through a tube straight into her tummy – called a mic-key – which was fitted when she was four months old after she couldn’t eat due to heart problems.
But despite the heart problem being fixed, she’s now too scared to eat due to a fear of choking, her mum said.
Grace’s crippling condition has become so severe doctors have warned it is only a matter of time before her organs begin to fail, her mum said.
Single mum Janine, a former fitness instructor from Widnes, Cheshire, said: “Last year I was over the moon because she ate two chocolates from her advent calendar.
“She’s stopped growing because of this.
“She’s incredibly pale and has dark circles around her eyes. She just constantly looks ill.
“I just feel completely guilty.
“I’ve exhausted every avenue. I just feel completely hopeless.
“We’re just not getting the help from professionals.
“I had a breakdown a couple of years ago because it was all getting a bit much. I’m working tirelessly to help save Grace only to watch her almost dying before my very eyes.
“I’m even studying to become a children’s counsellor to try and help.
“I’ve had this constant battle for 12 years and I just don’t know what to do.
“It’s now escalated from a fear to a genuine mental health issue.
“It’s the only thing she’s ever known. If we mention taking out her mic-key she goes hysterical.
“It’s now become so extreme, I’ve just hit a brick wall.”
Grace’s inability to keep food down started as a newborn when breastfeeding and bottle feeds would see her instantly throw up.
Doctors put a feeding tube down Grace’s throat which Janine claims wasn’t fitted properly and left her daughter “frothing from the mouth”.
But the mum-of-three said she was branded “a paranoid mother” by nurses.
Janine said: “She just has this fear of choking which she’s had since she was a few weeks old.
“During the first few weeks of her life she would projectile vomit after breastfeeding or bottle feeds so doctors decided to fit her with a feeding tube.
I had a breakdown a couple of years ago because it was all getting a bit much. I’m working tirelessly to help save Grace only to watch her almost dying before my very eyes.
“But it was shoved down her and she was literally frothing from the mouth. I always thought that was a figure of speech until I saw it with my own eyes.
“I was sick with worry thinking every night would be her last.
“When she was released I knew something still wasn’t right.
“I visited the hospital seven times and one time I overheard the nurses talking and calling me another ‘paranoid mother’.
“But I knew I was right. I had two daughters before so it’s not as if I was new to it all.”
When Grace was four-months-old she got a gastronomy feeding tube – a mic-key button – which feeds liquid food straight into her tummy.
It was supposed to be a temporary fix while she moved on to solid foods.
But months later during a follow-up appointment doctors spotted she had ALPACA syndrome – a rare congenital heart defect where the heart doesn’t get enough oxygen.
Medical staff said the condition was behind Grace’s food and choking problems, and at nine-months-old she had open heart surgery.
Days after the eight-hour surgery Janine noticed Grace still had no interest in eating but hoped she’d grow out of it.
What is Pseudodysphagia?
Pseudodysphagia, or the fear of choking, is sometimes confused with phagophobia, or the fear of swallowing.
Although both conditions involve the act of swallowing, the difference is in the precise nature of the fear.
People with pseudodysphagia often have difficulty eating solid foods.
Anxiety and tension cause throat muscles to constrict, which further increases the chance of choking.
Because it is a phobia, it is seen as a mental health problem, which may need therapy if methods such as chewing until food is mushy does not help the patient.
The phobia is associated with anxiety, depression, weight loss and panic attacks.
It is not clear how many people suffer with the phobia.
SOURCE: Verywellmind.com
But she hasn’t, and after countless uneaten packed lunches and school dinners, doctors have never been able to remove her food tube.
Single mum Janine used to make daily visits to her primary school in order to give Grace feeds via her mic-key.
But with her daughter left out of birthday parties and sleepovers, Janine decided to stop visiting when Grace started high school in September amid fears of bullying.
Now Grace’s fear of choking has become so severe she eats no more than “a palm full of food” a day causing her weight to plummet to four stone.
During the last two months Grace has lost half a stone, and doctors have said it is only a matter of time before her organs start failing, Janine claims.
Several psychologists have suggested Grace suffers with pseudodysphagia – a chronic fear of choking – but Janine said nobody has come up with a solution.
Grace’s condition has forced Janine to give up her job as a fitness instructor to become her full-time carer.
She said: “It’s not anorexia or bulimia. It’s been a constant battle all her life to be heard.
“All they tell me to do is to up her night feeds as if that’s a simple solution. She’ll store it in her cheeks like a hamster.
“I’ve tried mimicking her at dinnertime but it’s human instinct to swallow it.
“It’s more hard work to keep it stored in your cheeks.
“She does okay with dissolvable foods. Things like ice cream, yogurt, crisps – anything which doesn’t require the effort of chewing.
“But even then it won’t be a regular sized portion; it will be a handful of crisps or two spoonfuls of yogurt which will take over an hour to eat.
“The school are aware of her condition and even make special portions for her.
“But if they make a small bowl of pasta for her she will only eat six pieces.
“I used to make tailor-made portions for her for dinner but it would just be a waste of effort as she wouldn’t eat it.
“Now I just give her a smaller portion of whatever I make everyone else.
“I stopped giving her toast in the morning. For ease I give her two small scoops of ice cream in the mornings but she’ll only end up eating half.
“It’s not the ideal scenario but I don’t think anyone understands how hard it is.
“She uses every excuse there is when dinner is served. It’ll be ‘I don’t like this anymore’, ‘I’m just going to the toilet’ or ‘I’m feeling really sick’.
“I had to give up my job so I’m always on call.
Grace’s Diet
- Breakfast – Two scoops of ice cream or yogurt
- Lunch – Six pieces of pasta/half bowl of soup
- Dinner – Varies but will only eat stuff which doesn’t require chewing.
“At Christmas she’ll put everything on her plate but it will be more of the same. She’ll just eat mash and keep a mouthful of meat in her mouth for 30 minutes.
In a desperate bid to save her daughter Janine, has upped her daughter’s night feeds and has enrolled on a children’s mental health course at college to find answers herself.
“I decided to sign up to the college course when Grace started high school in September as I was adamant I wouldn’t go into the school to do feeds,” she said.
“I didn’t want her to be labelled and bullied for something she obviously can’t help.
“But when I’m doing the college work I feel like I don’t have time for Grace so I feel like I’ve let her down.
“I’m studying hard so I can understand the eating phobia as nothing has worked for Grace.
“That’s how desperate it’s become.
“This has a knock-on effect on my other kids too. I’m watching my family fall apart in front of my very eyes.”
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