This Canadian teen lost her hands and feet, she says more people should know how it happened

A Canadian teen is reaching audiences around the world with powerful social media videos showing life without hands and feet – the price she paid after developing sepsis.

"I think I want them to know that it's more common than people think, ... that any kind of infection can turn septic," said 19-year-old Amalie Henze.

The high school student in Brantford Ont. began feeling ill in October of 2023. She initially thought it was linked to her Crohn's disease - an inflammatory bowel disease (IBD) that causes the digestive tract to become swollen and irritated. But as Amalie grew more ill, she was taken to the ER, with what she described as "an impending sense of doom" as she waited 18 hours to be admitted.

Her mother, Amanda Henze, says Amalie underwent tests, but it was only when staff lifted her bed covers that they noticed her hands and feet had turned black: the signs of severe sepsis.

“Oh, this is septic shock," said Amanda in her interview with CTV News, recounting the reaction to her condition. "It's been missed, like, it's too late. It was really scary."

Sepsis happens when a common infection from bacteria, fungal infection, or a virus - think of the flu - triggers the immune system to overreact.

Amalie Henze is seen before her amputation surgery. (Image courtesy of Amalie Henze)

In Amalie's case, doctors later discovered a tear in her bowel that had let fecal matter spill into her abdominal cavity, triggering the infection.

The result was a dangerous fight between the bacterial infection and the body's immune response. If the immune system overreacts, it can damage the kidney, liver, heart and brain. The patient's blood pressure can drop, starving tissues for blood and oxygen. Sepsis is a medical emergency.

To save Amalie, doctors put her into a coma to stabilize her blood pressure and maintain blood flow to her brain and vital organs.

For three terrible weeks, the family waited.

"They were pretty clear that she probably wasn't going to make it," said Amanda, wiping a tear.

Thankfully, Amalie doesn't remember the worst of it.

When she became conscious, doctors had to ask for her permission to amputate her blackened hands and feet. "I had to do it to save my life." said the teen.

Amalie Henze is seen wearing one of two prosthetic feet. (Image courtesy, Amalie Henze)

Finding her audience

In her bedroom on the second floor of the family townhome, Amalie lifts up her cell phone with her arms, which now start about four inches above where her wrists used to be.

She leans the phone against the furniture and starts talking to her audience. She has approaching 50,000 followers and 3 million likes on TikTok. She just started on Instagram, where nearly 20,000 more watch her stories.

A tragedy that could have silenced her has made her loud and proud to tell others about the risks of sepsis.

"This is my personal launch. ... The resurrection of Amalie Moira Henze," she says in her very first sepsis post.

Dramatically, she rolls back her chair, to show her amputated limbs. "This is what septic shock does to you."

@amalie.moira Back and better than ever baby😉😘😘👅#crohnsdisease #fyp #septicshock ♬ original sound - amalie

Hers is a personal look at life without limbs. In one video, she shows how she puts on her prosthetic feet. In another, she demonstrates how she uses her phone and iPad with what remains of her arm to swipe and tap.

Her mother calls her inspirational.

"She gave me a hard time for not taking more pictures and documenting more of her rehab (in hospital) ... (She’s) got to educate people about how this can happen," said Amanda of her daughter.

Amalie says her messaging is having an effect.

"I get comments on my videos saying that they didn't know what sepsis was, and they've had an infection and they checked it out, and they're glad that they did before it progressed,” she said.

"It makes me feel like there's a reason that all this happened to me, and it's kind of turning a tragedy into something more beautiful," Amalie added. "I don't want other people to have to go through what happened to me."

Amalie Henze is seen with her mother, Amanda. (Image courtesy of Amalie Henze)

"I think that we don't hear enough from young sepsis survivors about the impact on their life, their health," said Dr. Alison Fox Robichaud, a critical care physician and scientific director of Sepsis Canada. "I think Amalie's message is so important."

There are an estimated 75,000 cases of sepsis in Canada each year. That's over 200 people a day who develop this medical emergency. About one in five don't survive.

Amalie spent nearly four months in hospital and rehab before going home. Sepsis, she admits, has changed everything about her and her family's daily routine. Prosthetic legs are helping her walk again, but she still needs someone near her much of the day for help eating and toileting. "A fully accessible bathroom is not very cheap, so I don't have a fully accessible bathroom, yet," she said.

But first on her list are prosthetic hands to give her more independence. "You can put up to 30 different commands in it, so I can grab, pinch, point, open and close," said Amalie. However, they cost $500,000. Some of it is covered by her father's work insurance, but the family is short about $120,000. Amalie is fundraising for the remainder.

"There’s been a lot of rough days, absolutely, for all of us," said her mother. "Seeing her getting stronger and really fighting for being more independent, that's great."

Could this be sepsis?

Many people have never heard of sepsis or know what it can do. Some know it by an older term: "blood poisoning.”

Dr. Alison Fox-Robichaud says there are several signs that could indicate someone is developing sepsis.

"Uncontrolled shivering, confusion, not making urine, changes to your skin color, blue or purple on the tips of your fingers or your knees," are clues, said Fox Robichaud.

She has been on a decades-long campaign to get sepsis recognized quickly in hospitals across Canada. Unfortunately, there is no simple test, but rather it requires a detective's look at where infection may be lurking in the body.

That's because there are many common triggers, including the flu, COVID, RSV, and even small skin wounds - like a paper cut - that become infected, which can cause a septic reaction.

At highest risk are children and seniors, and those with chronic illnesses like diabetes, arthritis, asthma, and cancer, though she says anyone can be affected. Prompt treatment, either by cleaning wounds or with antibiotics, helps. Vaccines, including those for bacterial pneumonia, may help prevent infections that lead to sepsis, she says.

Fox-Robichaud agrees it doesn't hurt for patients to ask about this disorder if they or a family member are feeling seriously unwell.

"I think if people come to the door and say, 'Could it be sepsis?’ That'll trigger (health workers) to say, ‘Okay, maybe I need to go look at what organs are working and what organs are not working," she said, with subsequent testing for signs of low blood pressure, low oxygen saturation, and signs the kidneys are failing.

Just a few weeks before Amalie's hospitalization, a U.K. member of parliament, Craig MacKinlay, developed severe sepsis.

His wife Kati - a pharmacist - noticed that his arms became cold and that his blood pressure was dropping and insisted on his transport to a hospital where he was diagnosed and placed in a coma for 16 days.

Like Amalie, he had both legs and feet amputated. He's now become a vocal advocate of sepsis awareness, telling the U.K. paper The Independent he plans to push for faster diagnosis so that “the health service recognizes sepsis at the earliest opportunity."

Amalie, meanwhile, is hoping to finish her high school diploma. She's aiming for a future where she has new hands, a job and a home that is adapted for her disabilities. “My goal would be to get a house that's fully accessible, so that I don't have to rely on anyone else. I see a lot of other quad amputees that are able to do that, so it kind of gives me hope that in the future."