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Born with malformed limbs 52 years ago, thalidomide victim still fights for compensation

Noëlla Hébert isn’t scared of anything.

The 52-year-old from Saint-Louis-de-Kent, who was born missing an arm and with malformations in her other limbs, says after a lifetime of fighting for acceptance and compensation, there isn’t anything left for her to be afraid of.

“I fought all my life to be to be looked at as a normal person,” she said. “This has been a battle from the beginning.”

Hébert is one of three New Brunswickers who were rejected from a 2015 federal compensation program for thalidomide victims. They have been arguing even since that they deserve to be recognized, compensated and given assistance for their far-reaching physical disabilities.

‘I took a drug, Noëlla’

Hébert grew up in rural Kent County knowing she was different and knowing her mother carried an enormous burden of guilt.

“I can remember my mom always said, ‘I took a drug, I took a drug, Noëlla, I took a drug.’ But me, I didn’t understand that … you always have in the back of your mind, ‘Why did she take that pill?'”

Hébert, at six, along with her mother, father and two older brothers in a family photo from 1974. Hébert says everyone in her family supported her, no matter what she wanted to do. (Submitted by Noëlla Hébert)

Thalidomide, promoted as a treatment for morning sickness, was approved and arrived in Canada as samples in 1959.

Canada was one of the last countries to pull it from the shelves in 1962, but Hébert and others believe it was still in circulation in rural New Brunswick for years after.

Her mother, Marie, said that’s what the local doctor gave her in 1967.

“She took sick,” said Hébert. “She had a very sore stomach. She had insomnia. She couldn’t sleep. And my grandma had just died. So that was the creation of all that.”

She explained that in the 1960s, when the village doctor gave you a bottle of pills, you didn’t ask questions.

“People were ignorant. They thought that medication were miracle cures,” said Hébert. “Back then, when you had an ailment if you could have the help of a doctor — that was God.”

Hébert was born without a left arm and with severe malformations in her other limbs. Her right leg is very short and attaches directly to her torso with muscles. She has no hips. A surgery was performed to turn her foot to allow her to use her heel as a make shift knee in her prosthetic leg. (Pierre Fournier/CBC)

There is no record that proves that the bottle of pills given to Hébert’s mother in 1967 contained thalidomide. There were few pharmacies in rural New Brunswick, and it was common for doctors to give medication directly to their patients. The lack of a prescription kept Hébert and 166 others from being part of a federal compensation program for victims in 2015.

“It was just a bottle of pills that was given from one hand to the other,” she said. “And so I did not have the documents that the government wanted but I still was a thalidomide victim.”

‘We got to push’

A 30-minute drive from Saint-Louis-de-Kent, Paul Richard was born in Rogersville in 1969 with malformed arms.

He believes his shorter-than-normal right arm, twisted hand and malformed left arm are the result of his mother also taking thalidomide.

Paul Richard, seen here after having several surgeries on his right arm, told his parents at the age of seven that he didn’t want to undergo any more operations. He says he ‘made do’ with his deformed right arm and went on to be a heavy equipment operator. (Submitted by Paul Richard)

“She was given a pill to alleviate nausea during her pregnancy and back then, well, they just took whatever doctors gave them and didn’t question anything,” he said.

Richard had three major surgeries on his right arm as a young child and remembers telling his parents when he was seven years old that he wasn’t going to have any more.

“I made do with what I had,” he said. “I played hockey all my life — I wasn’t Wayne Gretzky but I had fun.”

As far as he knows, his legs are fine. Richard jokes he’s always been able to “run from trouble.”

The husband and father of two worked as a heavy equipment operator at his father’s business when he finished school. When he could no longer cope with the physical demands, he changed careers and became a highway maintenance supervisor and now works in an office.

Richard worked for years as a heavy equipment operator until the pain in his good arm sent him to a doctor, and he found out his good arm was also malformed. He considers himself lucky to have been able to change careers twice in his life. (Submitted by Paul Richard)

Richard said he probably would have given up his battle for compensation, but Hébert is his mentor and if she keeps fighting, he will too.

“Thank God for Noëlla. I would give up but she keeps on telling me, ‘We got to push.'”

‘My body is my record’

Hébert, Richard and another New Brunswick man, from Val-Comeau, near Tracadie-Sheila, were among the 167 people who were rejected from the 2015 Thalidomide Survivors Contribution Program, which included a lump sum payment of $ 125,000, ongoing support payments and access to a medical assistance fund.

We’re not fraudsters, we are victims.-Noëlla Hébert

Even though their mothers have both signed affidavits saying they took thalidomide while they were pregnant, and even though genetics reports and doctors all point to thalidomide as the cause of their disabilities, neither Richard nor Hébert qualified.

“They put us all in the same basket that we would all try to fraud the system,” Hébert said of the third-party the government hired to determine who would qualify for the government program.

“But we’re not fraudsters, we are victims. It’s really really clear to see my body is my record — When you see me you can’t unsee me.”

Hébert has a prosthetic leg and has undergone several surgeries on both legs to allow her to walk. She has no hips and explains her legs are held in place with muscles. (Pierre Fournier/CBC)

Gesturing to her missing left arm, she points out the tip of a finger that pokes out of her shoulder. Her right arm looks normal, but has four skeletal malformations, including a thumb that is more like a fifth finger.

Her “good leg” does not have a hip and she has required reconstructive surgeries to allow her to walk. On the other side, she has a very short leg that is attached to her torso, again with no hip. She has undergone a surgery to turn her small foot backwards so she can use her heel as a makeshift knee in her prosthetic leg.

Forgotten victims

After 52 years, Hébert explained, her continued fight isn’t about the money.

She wants Canadians to recognize that she and others have lived their entire lives with severe disabilities and discrimination.

Hébert considers herself one of the “lucky” survivors, because she was born with a “firecracker personality” and a family who saw her as normal.

“My mom says that … when she looks at me, yes, I’m deformed. But when she looks aside she pictures me as a normal child. That’s the picture she had to create in her mind to be able to cope with this.”

Hébert uses a scooter to get around her home. She does not have a ramp to get into the house and bought the scooter at a bargain price from a seller on Kijiji. (Pierre Fournier/CBC)

Hébert laughs as she remembers her big brother’s reaction when, as a child, she told him she wanted to learn to swim.

“He said, ‘OK, let’s go.’ There was no, ‘How are we going to do that?’ or ‘You can’t do it.'”

Hébert went on to attend university and to become a lawyer. It was one of the most difficult times of her life not because of the academics, but because it was nearly impossible for her to walk from her dorm at the University of Moncton to her classes.

“When you only have one leg and you have to walk in three inches of snow and the leg’s not going — that was my biggest, biggest challenge,” she said. “How many times I fell on the snow, in the snow with my 50 pounds of books on my back and came to my dorm crying and called my dad, my mom.”

Hébert graduated from the University of Moncton law school and has been a practising lawyer for more than 20 years. (Submitted by Noella Hebert)

Again, Hébert’s family encouraged her not to give up when she was ready to quit.

“My dad would say, ‘Well go to bed, pray, put some A535 [medicated cream] and the first thing I want you to do when you open your eyes, call me and tell me how is it going.’ And just on cue the next day it was always going a little bit better.”

Hopes rise and fall

In January 2019, Hébert and Richard were hopeful once again when then minister of health Ginette Petipas-Taylor announced a new compensation program for those turned down in 2015.

We didn’t ask for that pill to be introduced in Canada, but we had to deal with the consequence.– Paul Richard

The Canadian Thalidomide Survivors Support Program promised a one-time payment of $ 250,000, annual payments based on the person’s level of disability and access to a medical assistance fund.

But their hopes were quickly extinguished. This time the hurdle wasn’t missing documents, it was birth dates.

The first step of the preliminary screening for the new program is that you were born within five years of March 2, 1962, when thalidomide was pulled from shelves in Canada.

Noëlla Hébert, a lawyer born with one arm and malformed limbs is one of three New Brunswickers still fighting in court to be recognized as victims of thalidomide. 3:44

“They said, ‘Well if the drug was still on the shelves after five years that we pulled it off the market, it should have been expired.’ And then they added nine months for the birth of the child,” Hébert said.

Anyone born after Dec. 21, 1967, will not be considered for compensation in this latest program. Hébert was born five weeks too late, on Jan. 31, 1968.

“It’s the most ridiculous thing I’ve ever seen but I’m not surprised,” she said. “We supposedly die about 10 years to 15 years younger of what we are supposed to. They’re just playing with time.”

Quest for closure, compensation

“We always miss the boat,” said Richard.

For him, the compensation would “help immensely,” but more important would be to finally be recognized as a victim.

“I know everyone wants something from the government,” he said. “We didn’t ask for that pill to be introduced in Canada, but we had to deal with the consequence.”

Richard understands the fact that his birthday also falls outside of the eligible dates is a hurdle, but he hopes it won’t be insurmountable.

Richard, seen here with his wife and two daughters, says being recognized as a victim of thalidomide would give him some closure. He says victims have suffered their entire lives because Canada allowed the drug to be sold. (Submitted by Paul Richard)

He is calling on the Canadian government to consider what life was like back in the 1960s in rural New Brunswick. It was a time when doctors handed out medication, and no one threw anything away.

“All those medications could have stayed in a medicine cabinet for a few years and when they needed it, they would take it.”

Like Hébert, he worries his body will continue to deteriorate, and he will need more support as he gets older.

Judge urges government to reconsider

The legal battle for Hébert and Richard continues. This month they appealed a ruling by Federal Court Justice Michael Phelan that would effectively close the door to them ever receiving any compensation.

Lawyer Alyssa Tomkins, a partner with Caza Saikaley, is representing Hébert and Richard, along with another New Brunswicker, pro bono.

She explained the 167 people who were refused government compensation in 2015 had launched a class-action lawsuit, which was settled in May.

Lawyer Alyssa Tomkins is appealing a court ruling that settles a class action lawsuit by thalidomide survivors. The settlement order, which is tied to a 2019 compensation program, would leave Hébert and Richard out. (http://www.plaideurs.ca)

The settlement order applies to all members of the suit, including Hébert and Richard, and means they have to accept the new 2019 program, even though it excludes them and 40 others based on their birth dates.

Tomkins is arguing that based on the negative or “deleterious” effects of the settlement on so many class members, the order should be set aside.

“Effectively, the settlement provides little benefit, we’ve alleged, to class members within the birth date framework. And yet it’s devastating to those outside it,” she said.

Let’s work with integrity and let’s show our hearts. We may have done mistakes in the past but it’s never too late to show compassion.– Noëlla Hébert

Tomkins worries that if the settlement holds up, it will make it “extremely difficult” for victims to ever get the government aid they are entitled to.

In his ruling, Phelan also raised concern about the birth date parameters set by the 2019 compensation program and said there was a “less than clear” explanation from government as to why it was necessary.

“Canada’s explanation for its rigid approach, while coldly scientific, lacked the compassion for the individual which the government espoused,” he wrote.

In his May decision, Justice Michael Phelan encourages the government of Canada to reconsider birth date requirements that exclude at least 42 people from a new compensation program for thalidomide survivors. (Federal Court of Canada)

“Some of the individuals failed to qualify by a matter of a few weeks — their stories were tragic and compelling. Class counsel recognized the problem but on this issue Canada was intractable.”

Phelan said if it was within the power of the court, he would have struck out the date parameters.

“Regrettably, the court is powerless to do anything about this issue, other than to encourage a compassionate reconsideration.”

Phelan goes on to acknowledge that class members are advancing in age and have increasing requirements because of their disabilities.

“Time is not their friend, if not yet their enemy.”

Despite this setback, Hébert is undeterred and ever hopeful that the many politicians she has met with over the years will reconsider and put an end to this “nonsense.”

“It’s never too late. We can say, ‘The past was the past. Let’s talk with integrity now. Let’s work with integrity and let’s show our hearts.’ We may have done mistakes in the past but it’s never too late to show compassion.”

‘I am a hero of history’

Hébert’s sense of humour is still in tact as she talks about some of the accommodations she needs to continue to live in her own home.

“I don’t have a ramp to bring my scooter with me in my truck. I don’t have a ramp outside my door. I don’t have the [modified] steering wheel because my steering wheel is too heavy for me to turn on my SUV.”

“It costs an arm and a leg — which I don’t have,” she jokes.

Compensation would allow Hébert to afford accommodations such as a ramp for her home, a ramp to be able to transport her scooter in her truck and an adaptive device to allow her to continue to drive. (Vanessa Blanch/CBC)

She knows the body she was born with will never allow her to do what her spirit would like, but she still looks forward to a day with simple accommodations — raised garden beds, for instance, so she can grow plants on her deck.

“It’s about the recognition of being who I am,” she said.

“I am a hero of history. I’ve conquered the world with a not normal body and instead of looking at us with eyes of pity, they should say to us, ‘Oh my God — you’re champions. You should have a medal.'”

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PharmaCare fight ends in win for B.C. amputees denied new limbs

Kia Johnsen will soon be able to walk on two feet again, one real and one artificial.

She’s finally won her battle to have the replacement of her worn-out artificial leg covered under B.C. health care —something denied to her and others who underwent ground-breaking surgery to have prosthetics attached directly to their bodies.

“It’s even better than Christmas,” said Johnsen, 46. “When I first got the call, I cried like a baby, actually sobbed.”

But she still shakes her head at the absurdity of the situation.

While one section of the B.C. Health Ministry, the Medical Services Plan, had approved and funded the expensive surgery, another section, PharmaCare, refused to pay to maintain the recipients’ prosthetics after the procedure.

The prolonged fight with PharmaCare— the Health Ministry program which assists British Columbians with medical supplies as well as prescriptions — has taken its toll.

Denied a new artificial leg, Johnsen has fallen several times after being forced back onto crutches. (Christian Amundson/CBC)

The delay meant her prosthetic leg finally wore out, forcing Johnsen onto crutches and into a wheelchair just to get around her hometown of Prince George.

She suffered repeated falls.

“It’s frustrating and depressing. And then you get angry,” said Johnsen.

$ 105K surgery

Johnsen first injured her knee in a skiing accident at the age of 11.

Years of surgery followed — ending in an above-the-knee amputation in 2013. Her fluctuating weight meant a standard prosthetic kept falling off. Her good bone density, however, made her a candidate for a revolutionary procedure being pioneered in Australia.

Three years ago, Johnsen was among three amputees in B.C. to be flown to Sydney to undergo “osseointegration surgery” at a cost of $ 105,000 each.

In the procedure, a titanium bar is implanted directly into the bone in the stump— also known as a residual limb — to allow more secure attachment of a prosthetic leg.

This X-ray of Kia Johnsen’s upper leg shows the titanium implant drilled into her bone. (Supplied/ Kia Johnsen)

Recipients experience better “body connection” to the prosthetic and even report feeling the texture of the ground beneath them.

It’s a massive improvement over the old “socket” method of attaching artificial limbs, where a cup is moulded to the shape of the stump and the prosthetic is held in place through suction or straps— which can cause rubbing and open sores.

But there was a hitch.

Osseointegration (‘osseo’ is Latin for ‘bone’) allows a prosthetic to be directly attached to the body. (Osseointegration Group of Australia)

It was only after the osseointegration surgery that Johnsen learned PharmaCare wouldn’t cover the cost of her artificial leg when it broke down, saying it had no policy to deal with maintenance of prosthetics after the new procedure.

Artificial limbs for all patients typically last three to five years — and basic models cost anywhere from $ 5,000 to $ 12,000 to replace.

Johnsen says when her artificial knee finally wore out, she was caught in a classic “Catch-22.”

“It was like winning the lottery. And then having it stolen,” said Johnsen.

‘It’s retraumatizing’

It took almost three years for PharmaCare to agree to cover new prosthetic limbs for osseointegration recipients, notifying Johnsen and another amputee of the change earlier this month.

Amputee advocates say it’s the right decision—but the delay was unacceptable.

“I can’t believe it took so long,” said Annelise Petlock of The War Amps, based in Ottawa.

“Every time we have to fight as amputees, we have to fight for essentially our arms and our legs. It’s retraumatizing,” said Petlock, an amputee herself.

‘I would give B.C. an ‘F’

Another issue remains.

Regular amputees in B.C. have long complained general coverage of prosthetic limb replacement is seriously inadequate.

PharmaCare policy dictates government tax dollars will only be paid out to maintain “basic functionality”— meaning more sophisticated, higher priced prosthetics are not covered.

Plus there are deductibles and a fee structure that critics say hasn’t been changed since 2008, setting replacement costs far below current market prices.

It means in B.C., only the most fundamental prosthetics are approved by PharmaCare. And even then, they’re only partially funded.

“We think Canadians would be shocked if they learned that if you lost a limb, you wouldn’t be appropriately covered by your provincial health care,” said Petlock. “I don’t think it should be nickel and diming on the back of the amputee.”

“I would give B.C. an ‘F’ because of the ‘basic functionality’ provision and how insulting that is to amputees in the province.”

Petlock says B.C. is the only province that has that provision.

In an email to CBC News, the B.C. Health Ministry says it plans to review its prosthetic policies this fiscal year.

‘I’m ecstatic’

Johnsen is just happy to be finally getting any kind of coverage.

She’s looking forward to receiving a new prosthetic— something she could never afford on her own.

Johnsen hopes to have a new prosthetic leg in the near future and say goodbye to her crutches and wheelchair. (Christian Amundson, CBC)

“I don’t really care what kind of knee [I get]. I’m not picky,” said Johnsen. “I just want to get up and do what I want and what I need to do. That’s the big thing.”

“I’m ecstatic.”

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Amputees face complicated system getting help paying for artificial limbs

A Pointe-du-Chêne man who lost his leg in a motorcycle accident in 1997 uses a prosthetic leg so worn out that parts of it are wrapped in duct tape.

Marc Polley says he can’t afford a new leg that would allow him to teach yoga and do other activities, and New Brunswick doesn’t cover anything more than a basic model.

Polley told Radio-Canada that he may move to Nova Scotia, where he believes the coverage is better.

But others in the system disagree, saying that navigating the labyrinth of funding in New Brunswick is difficult but comparable, if not better, than other provinces. 

Kirsten Simonsen, a prosthetist at Eastern Prosthetic Clinic in Moncton who has worked in the field for 28 years, lost part of her foot as a child. She said she is familiar with accessing prosthetics in different provinces.

At Simonsen’s clinic, she and her staff determine what will best suit a patient’s needs based on a variety of factors such as age, health, level of activity and cost.  

The prosthetic is built on site at a shop in the back. Once the mechanical limb is place, patients are taught how to use it, then return to the clinic for followup and adjustments as needed. 

Sydonyia Crossman would like to see the province pay for prostheses. Amputees who aren’t covered by private health insurance have to apply to the Department of Social Development and prove a financial need. (CBC)

Simonsen said any prosthesis is expensive, and her clinic ensures every patient has one that fits and works properly. 

A patient in New Brunswick receiving a prosthesis through the Social Development Department gets the equivalent of what any person accessing a publicly funded system in the country would get.

There is no such thing as a “welfare” leg, Simonsen said.

But there are people who slip through the cracks.

Sydonyia Crossman of Little Lepreau was born with spina bifida and doesn’t receive any provincial funding for her prosthetic.

“My right foot was turned out and twisted, so when I was a year and a half I had to do some corrective surgery, and I lost my foot and part of my ankle to that surgery.”

Kirsten Simonsen, a prosthetist in Moncton, says finding ways for patients to pay for prosthetics can be difficult but is usually possible. She has two full-time staff helping patients navigate insurance and government policies. (CBC)

She was fitted with a boot-type prosthesis and sent home. But she said thanks to her parents’ commitment, she was walking again by the age of two.

Later, because of health problems she had another amputation, this one below the knee.  

It’s easier physically, because you don’t have to think all the time where you are … because the leg thinks for you.– Clarence Allain

Her last prosthetic leg lasted 14 years, but in December, she replaced it with one that cost more than $ 9,000.

Crossman said many people assume prostheses are paid for by the province, but that’s not a given. In New Brunswick prostheses fall under Social Development, which requires patients to prove a financial need.

Because Crossman has a life insurance policy, considered an asset by the department, she doesn’t qualify for provincial money.

She turned to War Amps, which paid $ 4,000, to her husband’s insurance, which covered $ 2,400 and to her church, which raised the rest.

Serge Morneau, left, wears a mechanical prosthesis paid for by War Amps, while Clarence Allain wears the much more expensive microprocessor prosthesis. Morneau said he’d take out a loan if he though there was any way he could afford the microprocessor prosthesis. (CBC)

Crossman is grateful for the much needed help but worries about others who may not be so lucky.

“The issue is that if our church had not taken up an offering, we would have been responsible for thousands of dollars out of pocket,” she said.

“It’s a lot of money.”

A government spokesperson said the department couldn’t speak about specific cases but it has not refused a prosthesis deemed medically necessary in the past 12 months.

Social Development bought 25 prostheses for the year 2017-2018 and 13 in 2018-2019. None of the “basic model” claims by patients exceeded the maximum of $ 20,000.

Few can pay on their own

Simonsen’s clinic specializes in trauma, so other clinics may have different numbers, she said, but workers’ compensation covers a quarter of her patients and Social Development covers 15 to 20 per cent.

“I ran some numbers and it looks like … somewhere between three to five per cent of patients are paying out of pocket.”

Some of those people, however, have received money from lawsuits to cover expenses such as prostheses, she said.

A claim often involves one of many insurance companies, each with its own policies, War Amps, and the Department of Social Development, which requires a patient to prove a financial need.

Simonsen said the RCMP, Correctional Services Canada and the Canadian Armed Forces all have their own departments for dealing with claims.

“It takes a NASA engineer to navigate some of it.”

Two people at her clinic work full time to help people get through these complicated systems.

And money can make a difference, Simonsen said.

Allain, who lost his leg in a motorcycle accident in 2003, has a microprocessor prosthetic, which he was able to get with help from an insurance policy with his company. A leg can cost more than $ 100,000. (CBC)

For example, Serge Morneau of Saint-Isidore lost his leg in a snowmobile accident when he was six.

Because he was a child, War Amps stepped in and covered all the costs and continues to do so.

Morneau is thankful to have his prosthetic, a crucial tool in his life, and he walks with only a slight limp. But his mechanical leg makes it difficult to walk in crowds or in the dark.

He takes stairs one by one, and there is no walking backwards. He said he’s always concerned about falling.

$ 100,000 for leg with computer

If there were any way to pay for it, Morneau would opt for a much more expensive “robotic leg.”

These more expensive prosthetics, called microprocessors, can cost more than $ 100,000. The leg comes with a computer and sensors, and it needs recharging.  

Morneau had the opportunity to try one once, and he’s wanted one ever since.

“You walk way better with that.”

He said he’d take a personal loan out if he thought he could afford it.

Clarence Allain knows first-hand that microprocessors make walking, and life in general, much easier.

Morneau lost his leg after a snowmobile accident when he was six years old. He’s thankful to the War Amps for paying for his mechanical leg, but he’d love to be able to afford a robotic version. (CBC)

Allain lost his leg in 2003, when he was T-boned while driving his motorcycle. Allain learned to walk again in about three months, starting with a mechanical leg.  

“It was a more simple leg, just like a piston and that was it,” he said. “When you were walking you had to concentrate all the time.”

But his insurance policy through his employer covered prosthetics, so he upgraded to a micro-processor model.

“It’s easier physically, because you don’t have to think all the time where you are … because the leg thinks for you. 

“You can turn on a dime if you have to.”

Allows him to work

Allain won’t say how much money he paid out of pocket, but 80 per cent was covered by insurance.

“This one here, I paid quite a bit,” he said.

But mentally and physically he’s better off with his pricey prosthetic. He doesn’t think he’d still be able to work with a  mechanical version.

Both Morneau and Allain would like to see microprocessors available to more people and wonder if it would cost the province less in health care in the long run. 

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Woman who lost limbs after dog bite says sepsis foundation will save lives

An Ottawa woman who lost both her legs and one of her arms after a dog bite sent her into septic shock says a new foundation designed to spread awareness about sepsis and connect survivors will save lives.

The Canadian Sepsis Foundation will officially launch in Hamilton, Ont., on Monday afternoon. 

It was created by a doctor who works at McMaster University to help raise awareness about the illness, provide information on symptoms and offer help to survivors. 

Christine Caron said that type of support simply wasn't available back in 2013 when she was bit while playing with her small dog. 

The wound became infected and Caron's body went into septic shock, cutting off blood flow to her extremities. 

She was in a coma for 28 days and when she woke up, her new reality was almost too much to take. 

"I left the hospital being told there is no information, you will have to do research when you get out, there is nothing out there," Caron said.

"Apparently some patients have put together some support groups. This is what I was told leaving the hospital."

Christine Caron said the Canadian Sepsis Foundation will save lives by providing information on the symptoms of sepsis and offering survivors the support they need. (Robyn Miller/CBC)

'Not the only one suffering'

Since then, Caron has been working to support others like her online and will continue that work through the foundation as a patient partner.

"It's a comfort to know you're not the only one suffering this type of thing," Caron said. 

In January 2017, researchers argued in the Canadian Medical Association Journal that sepsis should be treated as a separate cause of illness and death around the globe.

An estimated 30 million cases of sepsis each year result in more than eight million deaths.

Post-sepsis syndrome

Caron said those who do survive are often suffering from post-sepsis syndrome, with symptoms that can include hair loss, anxiety, nightmares and loss of concentration.

She said many don't realize that what they are going through is normal. 

"They just survived hell. They think that they're getting better. Three months into getting better, you get slapped in the face with this," Caron said. 

Kelley Shields also survived sepsis following a hysterectomy in 2017 and hadn't even heard of the syndrome until connecting online with Caron. 

Kelley Shields is a sepsis survivor and said her recovery would have been much different is she had somewhere to turn for support. (Robyn Miller/CBC)

"I didn't know what was going on, and if I would have had somebody at the hospital give me that knowledge of post-sepsis syndrome, I would have been prepared for it. I would have had some tools to be able to say, this is normal," Shields said. 

Shields, who also lives in Ottawa, said the launch of the Canadian Sepsis Foundation is a huge step in the right direction.

"Having the sepsis foundation will take away the questions," she said.

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New mother who lost limbs to flesh-eating disease sues Halifax hospital

​Lindsey Hubley was diagnosed with flesh-eating disease four days after giving birth and is now a quadruple amputee, has undergone a total hysterectomy and has spent the first seven months of her son’s life in hospital.

Now, she’s taking legal action against the IWK Health Centre and several Halifax-area doctors for alleged wrongdoings in her care during the birth and her postoperative care.

Lawyer Ray Wagner said a statement of claim filed in Nova Scotia Supreme Court Wednesday alleges that the negligence of five doctors and the hospital caused or contributed to the health issues suffered by Hubley.

‘Lucky to have survived’

“She was very lucky to have survived,” said Wagner in an interview on Wednesday.

Hubley, 33, gave birth to her son Myles on March 2 but was rushed to the hospital a day after being discharged and was later diagnosed with necrotizing fasciitis, otherwise known as flesh-eating disease.

Wagner said it’s alleged part of the placenta was not removed at birth, and that she had a tear on her vagina that required sutures, which could have contributed to her health issues.

He said it’s also alleged that when Hubley returned to the hospital on March 5 with abdominal pain — the day after being discharged following the birth — an examination was not performed.

Damage ‘could have been prevented’

Hubley was diagnosed with constipation and sent home.

“Our allegations are that had she been properly assessed when she presented at the hospital … a substantial part of the damage, if not all of it, could have been prevented,” said Wagner.

The next day, she was rushed to the hospital after experiencing more pain and discolouration on her body.

She was later diagnosed with flesh-eating disease, and has since undergone multiple surgeries, including amputations below both of her elbows and knees and a total hysterectomy.

‘Life has been put on hold’

The allegations have not been proven in court, and the IWK did not comment on the claims Wednesday.

Hubley’s fiancé, Mike Sampson, 34, who is also named as a plaintiff in the case, has not been able to work since Myles was born. He said “life has been put on hold.”

“Myles and I make our way into the hospital pretty much every day to see mama,” said Sampson in an interview Wednesday. “Our lives have been turned upside down.”

‘She’s incredibly positive’

But despite the horrific ordeal, Sampson said his fiancée has remained very positive.

“No mom should ever have to watch their fiancé and their son walk out the door every night for over 200 days,” he said.

“She’s incredibly positive … She has an outlook that this process has taken her arms and her legs, but it’s not going to take her happiness.”

Sampson said Hubley is no longer infected but does require more major surgeries — including a kidney transplant — however they are hopeful she’ll soon be able to start attending rehab.

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CBC | Health News