After Quebec Teen’s Food Allergy Death, Her Parents Call for OIT Clinics

A Quebec teen lost her life to a severe food allergy, and her grieving parents aren’t even sure what she ate that triggered the anaphylaxis.

Sarah-Émilie Hubert, 15, had been allergic to eggs and dairy since she was a child and knew how to deal with them. The teenager from Gatineau, western Quebec, avidly read food labels and was careful about what she put in her mouth and washing her hands.

Her parents say the athletic girl, who loved baseball and badminton, was responsible, independent and always had an epinephrine auto-injector on hand. By being cautious, she had avoided a reaction for five years. The Quebec teenager even recently ran a school project to educate others about food allergies. She explained how severe anaphylaxis could be and that her own food allergies could trigger a massive immune response, including swelling of her airways, leaving her unable to breathe. But in the end, consciousness could not prevent the catastrophe.

At around 2:20 am on June 25, Sarah-Émilie woke her parents to tell them that she was having an allergic reaction and that it didn’t look like her asthma. Her mother, Lyne Robert, immediately gave her an adrenaline shot. But she continued to deteriorate. Her father Stéphane Hubert drove her to the hospital, which was only five minutes away. Faster, he said, than waiting for an ambulance.

But it was in vain. After trying for at least four hours to revive Sarah-Émilie by administering more adrenaline, cardiac massage and inserting a breathing tube, doctors said she had died. The cause is thought to be food anaphylaxis.

What her parents had always feared—what every parent of a child with a food allergy fears—had suddenly become a reality.

Parents’ OIT plea

The grieving parents are unsure which food triggered the reaction. But they believe Sarah-Émilie had been trying to control the symptoms for some time before waking them up. “We think maybe earlier in the evening she had a little reaction and took Benadryl and Reactine [Zyrtec]and used her ventolin (inhaler) and then realized it wouldn’t go away,” Hubert told Allergic Living.

Quebec teenager Sarah-Émilie Hubert has died of foodborne anaphylaxis.  Now her parents are calling for OIT clinics across the province "to save lives".
Sarah-Émile Hubert, 15, at the MLB game

“But we don’t know, we can’t know for sure. At 2:20 a.m., in the face of an emergency like this, you don’t have that kind of conversation.”

Now the parents of the Quebec teenager are leading a petition calling on the provincial government to provide funds to open oral immunotherapy (OIT) clinics in regions outside of Montreal. It collected nearly 1,700 signatures. Sarah-Émilie had expressed an interest in attending such a treatment but it was not available in her area.

OIT is used to desensitize patients with allergies to foods such as peanuts, eggs, or dairy. The process involves consuming tiny, then gradually larger amounts of an allergen until a maintenance level is reached. While the treatment is not a cure, it does provide protection from accidental allergen exposure.

Oral immunotherapy is not yet an established practice in Canada. It is conducted largely in research settings, and Quebec’s only official OIT clinic is in Montreal, at Sainte-Justine Hospital for Children.

“It’s too late for us, but it’s time to say ‘enough’,” said Hubert. “I know it’s not a foolproof cure, but if it can potentially reduce an allergic reaction, then it could save lives.”

He rejects arguments that OIT is too new and experimental as a therapy or that Sainte-Justine can serve all Quebecers. “It’s more about who’s going to pay for the clinics, a battle of accountants. But we have the staff and the expertise in the regions. Let’s use this for our children and adults who are allergic.”

Quebec Teen honored

Liane Beaudette is a Clinical Research Nurse at Montreal Children’s Hospital specializing in OIT work. She understands the request and the tragic loss of the Huberts.

But after six years of working directly with OIT patients, she knows the treatment carries risks of anaphylaxis. She emphasizes the need for specialized teams that know how to manage high doses and symptoms that can become severe. She also doubts that expanding OIT to all regions of Quebec is financially feasible given the staffing shortages in hospitals.

“What happened to Sarah-Émilie is something everyone who works with children with allergies fears. It’s devastating,” Beaudette said. “At the same time, we still have a lot more research to do. Two of us nurses are specialized in OIT in Children’s Hospital. We see patients both as part of our research and some outside of it. And we need everything to protect them, from emergency carts to oxygen; I still believe this is best done in a hospital.”

Advances in allergy treatment are important. But Beaudette’s more immediate concern is that there are too many concerns about using epinephrine for allergic reactions.

“The mantra has to be ‘Epi first, epi fast’. Teachers, coaches, nursery and day care workers should all be educated and educated,” Beaudette said. “I’ve heard from paramedics who don’t want to give adrenaline, who don’t yet know that people can be allergic to cow’s milk.”

Back in Gatineau, Sarah-Émilie will be remembered, the left-wing athlete who wore the number “26” when she played at first base, in the outfield, and even as a pitcher for her baseball team.

From her teammates, who will all wear their number on their jerseys until the end of the season.

About her friends, with whom she spent the last night via video chat in her room.

And from her family saying the best way to show respect is to sign the petition to support more OIT clinics.

The petition to the Quebec Assembly, which anyone can sign, can be found here.

Related reading:
Teenager with peanut allergy dies of reaction that started at school
Palforzia OIT study: maturation of the immune system over time
dr Sharma on: How do I know when to use the auto-injector?

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