Little Winnie is facing a condition so rare she is one of just two in AustraliaBy Riverine Herald
THIS gorgeous child’s illness defies understanding and is something faced by only a handful of people around the world. CHARMAYNE ALLISON talked to the Ross family about their daughter’s diagnosis with Virus Induced Hypersecretion of Mucus — and their daily struggle to simply keep her alive
WINNIE Ross is racing around the house, clattering, chattering, everything done at a mile to the minute.
Which is normal – after all, she’s only four.
But when her nose starts to run, there’s no sleeve across the face and ignoring it like every other four-year-old.
She runs faster than her nose and straight to her mother.
Who goes straight onto high alert.
Because Sarah Ross knows it almost certainly means hospital.
Winnie appears perfectly healthy, bursting with energy and literally bouncing off walls.
But Sarah knows all too well that within a few hours it could all spiral out of control.
Winnie is a walking, talking medical time-bomb – and one of only two cases of Virus Induced Hypersecretion of Mucus (Viper) in Australia.
An extremely rare form of chronic bronchitis, it means any virus – from the common cold up – goes straight to her lungs and her body starts to shut down.
“And shut down hard and quick,” Sarah said.
Still a murky area of medicine, Winnie is currently the featured case of a medical paper and a frequent flyer at the Royal Children’s Hospital.
It’s all she’s ever known, for Winnie this is her life.
In her four years the longest she has been able to stay out of this hospital or that, is five months.
She’s all too familiar with the sound of PIPER planes arriving to rush her to RCH.
Rides in the ambulance have become so routine, Winnie’s now happy to go by herself – so helpful in her condition, so sad for such a little person.
And her family – dad JJ and siblings Olive, 7, and Fergus, 11 months – has become accustomed to living in their rarefied world where every day could be the next life or death incident.
They all watch her like a hawk, waiting for the inevitable next tell-tale sign that will mean another terrifying rush to emergency.
Winnie’s parents first suspected something was up when their baby was just six weeks old.
“She got a rash and doctors thought it was from asthma so they gave her antibiotic creams but that basically just fed it,” Sarah said.
Then, at one, things really started to go downhill and the family’s nightmares began.
Winnie was sick constantly; her doctors thought she might have pneumonia but wouldn’t, couldn’t, do a chest X-ray because they said she was too young.
Finally after months being passed around by doctor after doctor the first positive news was to be found at home with Echuca’s Dr Cam Hunt.
He nailed what no-one else had recognised and after some research suggested the Ross’ look into a respiratory specialist and told them about Dr John Massie at RCH.
It was the best advice they had received but when Sarah and Winnie travelled down for the first appointment the “shit hit the fan” she said.
Winnie had become sick and been rushed to ED.
Doctors discovered her lung was so blocked with mucus it had collapsed in areas.
They believed it was untreated pneumonia, meaning she had to undergo a bronchoscopy.
But she was now, finally, in safe hands and Dr Massie, a leading children’s specialist in respiratory conditions started ruling out, one by one, all the diagnoses she had received.
Being trapped in that bubble of fear and uncertainty can still reduce Sarah to tears.
“There was a stage where we thought she might have cystic fibrosis,” she said.
“But at the end of the day we didn’t care, we just wanted answers because she was getting sick basically every four weeks.”
Finally, she was diagnosed with Viper.
“Dr Massie said there have been some kids who have it but it’s only when they’re younger for a short time,” Sarah said.
“But JJ and I said to him the other day, ‘so John, we’re not growing out of this, are we?’
“He said, ‘no’.
“He said there was only one other kid out there similar to Winnie and he was 14 and still had it – but he’d had a few years’ break in between.
“Winnie has only had five months.”
While Dr Massie is currently investigating the rare condition and about to publish a medical paper based on Winnie, Sarah’s focus is just on keeping her little girl alive.
From which there is little or no escape. Her baby has to be watched all day, every day, especially as a revolving door of regional doctors struggle to treat a condition they’ve never seen.
And whatever you do, don’t mention Ventolin.
“I hate the word,” Sarah snapped.
While it eases symptoms for people with asthma, a major side effect is the way it makes your heart rate rise – but in Winnie’s case it just keeps rising.
She had been rushed to the Children’s ICU earlier this year because doctors at a large regional hospital failed to read her records correctly and gave her the forbidden medication.
“It’s like sending her into immediate cardiac arrest, it’s horrifying,” Sarah said, her eyes filling with tears.
“She couldn’t breathe, it was like watching somebody have a seizure. She was just screaming for her dad, her dog, her brother and kept pleading ‘can you take me to the big hospital please?’
“It was the first time I said to my husband I think we’re not going to come out of this.
‘‘I have to monitor every hospital’s every move because it is always an assumption she has asthma – there’s no time to be off-guard.’’
Sarah now urges doctors to sedate her daughter immediately, as the tot has become so traumatised from previous admissions.
“We still have doctors trying to diagnose her but at the end of the day, let’s just deal with it – and the only way to do that is with oxygen,” Sarah said.
“Fortunately the nursing staff at Echuca have been incredible — they have become familiar with Winnie and me, do everything they can to make sure new doctors are up to date and make calls to RCH and PIPER.’’
It’s been physically, mentally, emotionally and unbelievably draining for the family as they struggle to establish any kind of domestic rhythm in a life constantly interrupted.
Yet through it all Sarah insists they have still been lucky.
“There are kids in the RCH respiratory ward who are still in there from last year,” she said.
“So we’re lucky because we get out.”
While the future is uncertain – each day, each hour is uncertain – Sarah said the family holds on to dreams of one day going to Disneyland.
“Any time we’re rushing to the hospital and she’s drifting in and out of consciousness I just say, ‘Disneyland, I promise. This is not going to last forever’,” Sarah said.
Right now, they’re working with a speech therapist to plan Winnie’s upcoming first year of school.
Because she could barely breathe from a young age, Winnie struggled to speak and developed her own sign language from about 12 months which her family and kindergarten teachers have picked up over time.
“Winnie’s happy to go to RCH now because she knows she’ll get McDonald’s (Sarah cups her hands, showing Winnie-talk for Macca’s) and a chip (she holds her hand up, palm towards her).”
In addition to scoring a Happy Meal, Winnie knows that’s where she’ll get better.
Like too many families, Sarah and Winnie know RCH inside-out and are on first name terms with everyone from the senior medical staff to the cleaners – they now take the back-door entrance to the Sugar Glider ward and all the nurses basically welcome them home.
It’s a familiarity no family wishes for.
But Sarah and JJ are anything but resentful – just so grateful for the high-quality, loving care their Winnie has received and the tireless efforts of Dr Massie and his amazing team to find answers.
And they are encouraging locals to support tomorrow’s Good Friday Appeal so life-saving work at the Children’s can continue.
‘‘Without the support and facilities of RCH we may have lost Winnie many times,’’ Sarah said.
‘‘Who knows what lies ahead but this hospital means so much to so many families like ours.
‘‘Tomorrow make every spare cent count because while we all know someone who has been there, you never know if that next someone is you.”