A Quebec teen has lost her life to a severe food-allergic reaction, and her grieving parents are not even certain what she ate that triggered the anaphylaxis.
Sarah-Émilie Hubert, 15, had been allergic to eggs and dairy since she was an infant, and knew how to manage them. The teen from Gatineau in western Quebec assiduously read food labels, and was vigilant about what she put in her mouth and about handwashing.
Her parents say the athletic girl, who loved baseball and badminton, was responsible, independent and always had an epinephrine auto-injector close at hand. Through being cautious, she had avoided having a reaction for five years. The Quebec teen had even done a recent 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 reaction, including swelling her airways so she couldn’t breathe. Yet, in the end, awareness did not prevent disaster.
Around 2:20 a.m. on June 25, Sarah-Émilie woke up her parents to say she was experiencing an allergic reaction, and that it did not seem like her asthma. Her mom, Lyne Robert, immediately administered an injection of epinephrine. But she continued to deteriorate. Her father, Stéphane Hubert, sped her to the hospital, only five minutes away. Faster, he said, than having to wait for an ambulance.
But it was to no avail. After at least four hours of trying to revive Sarah-Émilie through the administering of more epinephrine, cardiac massage and the insertion of a breathing tube, doctors declared she had died. The cause is considered food anaphylaxis.
What her parents had always feared – what every parent of a food-allergic child fears – had suddenly become a reality.
Parents’ OIT Plea
The grieving parents aren’t certain what food sparked the reaction. But they think Sarah-Émilie had been trying to control the symptoms for some time before waking them. “We think maybe she had a small reaction earlier in the evening and took Benadryl and Reactine [Zyrtec], and used her Ventolin (inhaler), and then realized it was not going away,” Hubert told Allergic Living.
“But we don’t, we can’t know for sure. At 2:20 in the morning, faced with such an emergency, you don’t have that kind of conversation.”
Now, the Quebec teen’s parents are spearheading a petition that calls for the provincial government to dedicate funds to opening oral immunotherapy (OIT) clinics in regions beyond Montreal. It has garnered over 1,700 signatures. Sarah-Émilie had expressed interest taking part in such treatment, but it wasn’t available in her region.
OIT is used to desensitize patients with allergies to foods such as peanuts, eggs or dairy. The process involves consuming minute, then gradually larger amounts of an allergen until a maintenance level is reached. While not a cure, the treatment affords protection against inadvertent allergen exposures.
Oral immunotherapy is not yet a mainstream practice in Canada. It is largely done in research settings, and the only official OIT clinic in Quebec is in Montreal, at the Sainte-Justine hospital for children.
“It is too late for us, but it is time to say, ‘enough,’” said Hubert. “I know it is not a surefire cure, but if it can potentially reduce an allergic reaction, then it could save lives.”
He dismisses arguments that OIT is too new and experimental as a therapy, or that Sainte-Justine can serve all Quebecers. “The issue is more about who will pay for the clinics, a battle of the accountants. But we have the personnel and the expertise in the regions. Let us use that, for our kids and adults who are allergic.”
Quebec Teen Honored
Liane Beaudette is a clinical research nurse at Montreal Children’s Hospital who specializes in OIT work. She is sympathetic to the Huberts’ plea and tragic loss.
But in six years working directly with OIT patients, she knows the treatment carries anaphylaxis risk. She stresses the need for specialized teams who know how to manage updosing and symptoms that can turn serious. Plus, in a climate of hospital staffing shortages, she doubts it’s financially feasible to expand OIT to all regions of Quebec.
“What happened to Sarah-Émilie is what all people who work with kids with allergies fear. It is devastating,” said Beaudette. “At the same time, we still need to do a lot more research. Two of us nurses specialize in OIT at the Children’s. We see patients both as part of our research and a few outside of it. And we need everything to protect them, from crash carts to oxygen; I still believe that is best done in a hospital.”
Advances in allergy treatment are important. But Beaudette’s more immediate concern is that there remains too much hesitation to use epinephrine during allergic reactions.
“The mantra must be ‘epi first, epi fast’. Teachers, coaches, kindergarten and daycare workers should all be trained and educated,” Beaudette said. “I’ve heard of paramedics who don’t want to give epinephrine, who are still unaware that people can be allergic to cow’s milk.”
Back in Gatineau, Sarah-Émilie, the lefty athlete who sported the number ‘26’ when she played at first base, in the outfield and even as pitcher for her baseball team, will be remembered.
By her teammates who are all wearing her number on their uniforms until the end of the season.
By her friends, with whom she spent her last night video-chatting in her room.
And by her family, who say the best way to pay respects is to sign the petition in support of more OIT clinics.
The petition to the Quebec Assembly, which anyone may sign, can be found here.
Related Reading:
Peanut-Allergic Teen Dies of Reaction that Began at School
Palforzia OIT Study: Maturing of Immune System Over Time
Dr. Sharma on: How Do I Know When to Use the Auto-Injector?
