By MICHELE MANDEL, Toronto Sun, 30th January 2010.
Downstairs in the rehab wing of Markham Stouffville hospital, in a private room with a sunny window, lies Donna Hartlen, a young mother who is now partially paralyzed.
The Whitby woman can’t stand without leaning on a walker and her legs are too numb to allow her to walk for more than a few steps. The right side of her face is paralyzed, she can’t properly chew solid food and her right eye is bandaged because she can no longer blink to protect it.
Until five weeks ago, she was a perfectly healthy woman spending Christmas with her family in Nova Scotia. And then on Dec. 29 she was rushed to an emergency room in Halifax, suddenly unable to stand on feet.
The doctors diagnosed her with Guillain-Barre syndrome, a rare neurological condition characterized by sudden weakness or paralysis. And while no one seems willing to discuss the likely cause, the 39-year-old knows exactly where the fault lies.
She blames the H1N1 flu shot she received on Dec. 13 – two weeks before her symptoms suddenly appeared.
Of course, there is no way to know for certain. But Hartlen has only grown more convinced since chatting by chance in the hall with the older gentleman from the hospital room next door.
Don Gibson has GBS as well, with legs so numb now that he is confined to a wheelchair. It turns out that not only was he also vaccinated against H1N1, but he got the shot just two days before Hartlen, in the very same Markham doctors’ office.
“It’s way too coincidental,” insists the slight mom, her words slurred because the right side of her face will not move. “It’s either a bad batch or a lot more people are getting this than they are talking about.”
Her 80-year-old neighbour is equally convinced that the H1N1 vaccine to blame. “It must have been a bad batch,” Gibson believes. “But nobody is saying anything. I know I signed a piece of paper and there’s no liability but it’s pretty scary.”
They are now comrades in arms, an unlikely duo who share a rare illness and a similar vaccination history that no one wants to acknowledge.
According to the Public Health Agency, there are about 600-700 new GBS cases a year in Canada, caused usually by food-borne bacteria, respiratory infections or surgery.
“The risk of getting GBS after any flu vaccine is about one case for every million doses distributed,” the website says. “The benefit of the vaccine outweighs this theoretical risk.”
So far, the agency says they haven’t had any unusual spike in GBS – there’s been 22 cases following the H1N1 vaccination – or .87 per million doses distributed. But Hartlen questions how many GBS patients are actually being reported; she says she was the one who finally called her local public health department because no medical professional seemed interested in the possible connection.
“Not a single doctor we’ve talked with will even remotely discuss that it’s the H1N1 shot,” marvels Hartlen. “They almost pretend they don’t hear you. They don’t want to alarm the public and they don’t want you to stir up trouble.”
So GBS patients like Hartlen and Gibson are on their own.
Right now, Quebec is the only province with a no-fault vaccine injury compensation program in place.
“It’s a horror story of how little Ontario will do to help patients that come down with this after the government promotes it so much,” complains her husband, Wayne Burke.
They have two little girls at home, just 4 and 2. He works full-time at Telus; she was a self-employed business systems analyst. With no family in Whitby, they flew in her parents from Nova Scotia, but the elderly couple can’t look after the kids indefinitely.
Meanwhile, Hartlen has been told it can take months – and up to a year – before she completely regains all movement. So how is the partially-paralyzed mom supposed to take care of two young children until then?
“If my kids were 10 and 12 it would be different. But a four and two-year-old need 100% attention and I can’t give it to them,” she worries.
So she’s hardly unreasonable in expecting some kind of government support. But after countless phone conversations with every level of bureaucrat, she’s learned there will be no such thing.
“They’re the ones who push this vaccine. They promote it every five minutes on TV. So I do what they say and I get GBS and they’re not going to help me?
“I need help for my kids – I’m not looking for anything extravagant. I’m not an ambulance chaser. I don’t want to sue anybody. I just want to get my kids looked after while their father is at work.”
Instead, there is only a shameful silence.
Read Mandel every Sunday, Thursday and Friday. firstname.lastname@example.org or 416-947-2231.