HomeOp Ed: Compassion and support, not blame

Op Ed: Compassion and support, not blame

August 18, 2016

By now, most of you will have heard about Simon-Pierre Canuel’s severe allergic reaction at a Quebec restaurant. This is a difficult situation for all involved, and our sympathies go out to M. Canuel. The man almost lost his life when he was served a meal containing salmon which he is allergic to – an allergy he reportedly advised the waiter about before ordering his meal. While Food Allergy Canada is working to turn this negative event into a positive campaign for universally required education and training in the foodservice industry, there is a particular aspect of the public debate that has unfolded which I want to address.

As Executive Director of Food Allergy Canada, and the mother of a young man who has lived most of his life with multiple food allergies, I was surprised by some of the commentary from within the allergy community that suggested M. Canuel was primarily to blame for his reaction because he left his EpiPen® in his car. While we advise people with food allergies to always carry their auto-injectors with them, we cannot ignore the reality that mistakes can happen — a routine temporarily altered, or, on a (hopefully rare) occasion, an auto-injector is forgotten. This has happened in my own family and I suspect that I am not alone. As many pointed their finger at M. Canuel, I wondered how many had thought: What if this had been me, or my child?

We speak a lot in the community about “shared responsibility” in managing food allergies, while recognizing there is no such thing as zero risk. There should also be recognition then, that zero mistakes are likewise unrealistic. This is why empathy, compassion, and support are such a fundamental part of our community. We know what it is like to have our concerns diminished or ignored. We relate to the anxiety of approaching a new life stage with a food allergy. It is why we fight for recognition together, advocate for policy change together, and extend our compassion and support when a member of our community is deeply affected, including losing a loved one due to an allergic reaction.

I have asked two other mothers to share their own perspectives on the events of the past couple of weeks. They are deeply personal reflections based on their own experiences. Carla Da Silva lives in Montreal and is the mom of a young boy with multiple food allergies. Leah Gallo lives in Hamilton. Her daughter Maia died of an allergic reaction when she was 12. Leah has another daughter with food allergies. Our stories follow below.

It is by learning from each other and respectfully discussing the ways in which we can work together as a community that we will succeed in our ultimate goal: to make life better for people with food allergies.

I would love to hear your stories, too, and invite you to email us at info@foodallergycanada.ca.

Laurie Harada, Executive Director

Julian dining out with his family

Julian dining out with his family

Profile: Laurie Harada, Food Allergy Canada

My son, Julian (now 22) was diagnosed with an allergy to peanuts and tree nuts just before he started Junior Kindergarten and by Grade 1, his list grew to include shrimp, chick peas, split peas, and soy. Like many parents, we worried a lot about him, while doing our best to teach him to self-protect. He learned from an early age that he had to have his auto-injector with him; it was like a seat belt, there to protect him in the event of an emergency, and he was to always carry it with him.

I recall the day that Sabrina Shannon died, in September 2003 and my discussion with Julian. I wanted him to hear the news from me, not through others. When he asked whether Sabrina had her EpiPen® with her, I told him that, unfortunately, it was not with her that day. I was surprised when he asked if she was at fault. I explained that something had happened to cause her reaction and that there were many things we did not know – and that nobody should blame Sabrina. It was chilling to think that my 9- year-old would think that you would be “at fault” if you did not have your auto-injector and suffered a severe reaction. I would never want him to blame himself if that should happen. Later, as we learned more about Sabrina’s story, in the words of her father, Mike, it was an “unguarded moment”, as she typically did carry her EpiPen with her.

In the early days, I used to say that “Julian always has his auto-injector….he never goes out without it”. Well, I learned to stop using absolutes. He’s forgotten to take it with him and so have my husband and I (when Julian was young). Last December, just as we were heading into a restaurant for a family dinner, Julian realized that he had left his auto-injector in the pocket of his jeans when he changed to dress pants. A simple mistake. Fortunately, we were close to a pharmacy and he was able to purchase one. Our family rule was: No EpiPen, no food.

But, what if this had not been the case and he had a reaction from something he ate, only to realize his auto-injector was at home, not with him. Would this be his fault? I would like to think that others would feel compassion, recognizing that it was human error, not recklessness, that caused him to forget on that one occasion. And in the grand scheme of things – he has it with him almost 100% of the time.

What I’ve learned over the years is to not be quick to judge others when hearing about close calls with allergic reactions. Instead, I ask: What happened? And what can we learn from this situation?

Christian at Plaza de España (Seville, Spain) this past summer

Christian at Plaza de España (Seville, Spain) this past summer

Profile: Carla Da Silva, a Quebec-based consultant for Food Allergy Canada

My initiation into the food allergy world occurred when my son, Christian, experienced his first anaphylactic reaction at 6 months of age. Growing up with six food allergies has not held Christian back at all. He is an energetic boy who loves sports and lives life to the fullest, as only 8-year-old boys can. As a parent, I face a unique challenge. I, now, must raise a boy allergic to dairy, eggs, wheat, peanuts, tree nuts and shellfish to thrive in a world where his allergens are everywhere and in everything. I have to send him out into the world to live his life as normally as possible without fear, while being cautious and vigilant. What do fearless 8-year-old boys understand about being cautious and vigilant?

I have taught him to follow a few simple rules: be careful, not fearful; share toys but not food; no Epi, no food. All this while teaching him to navigate in the world around him – at school, at birthday parties, at the restaurant, while on vacation. These are the places and experiences that all children his age encounter, and so should he, albeit a little differently to ensure that he is safe.

The most difficult conversation as the parent of a child who carries an auto-injector daily came when he finally grasped that allergies could be fatal. How to explain to a child, 6-years-old at the time, that an inadvertent ingestion of any one of his allergens could result in his death?

Now I have to explain to him why he hears headlines saying that those with allergies should not eat in restaurants. “Why not?” he wants to know. “It’s fun to eat out” he reminds me. He does not really understand why this is such a hot issue. To him, it is simple: he tells the server about his allergies, which he has been doing since he was 4, sometimes with the help of his bracelet to remind him, as the list is long. Foodservice staff generally are impressed with this little guy who diligently lists his allergies, pausing while they take notes. His dad and I interject to discuss with the server about ingredients and kitchen protocol to avoid cross-contamination, and then hold our breath as he takes his first bite of a meal where we did not control the preparation. For the most part, our experiences have been positive. Servers are helpful, sympathetic, and provide us with the information we need to make safe choices for him so that he can enjoy the dining experience.

I know that no one wants to harm another and any mistakes are due to a lack of understanding regarding the procedures to have in place to protect customers with allergies. Rather than focusing on the fact that the epinephrine was not on hand when it was needed, let’s help those who work hard so that we can enjoy a relaxing evening out. Let us focus our energy on giving them, the foodservice establishments, the tools they need to implement procedures and strategies to prepare safe meals for my child and all others with food allergies through education and training.

Maia, a few days before her death

Maia, a few days before her death

Profile: Leah Gallo, a mother who lost her daughter to an allergic reaction

My daughter Maia passed away in 2013. Cause of death: anaphylaxis. Her death was in a food court at a local mall, where she had consumed an ice-cream cone. I was not with her that day at the mall and when I got the phone call saying Maia was in distress and someone was helping her, I knew instantly she was gone. My heart literally snapped…broke. I held onto hope when I was on the way to the hospital, but deep down I already knew. A mother’s worst fear of raising a child with allergies happened.

From the moment of her death, I had media contacting me. After one of the first interviews I did, the reporter (off camera) asked me if I was considering a lawsuit against the food establishment where my daughter had the allergic reaction. My immediate answer was ‘It didn’t even cross my mind’. My thoughts went to the person who served her the ice cream cone. Why would I want to put that blame on someone? How would that make that person feel? To know or think that they were responsible for my daughter’s death, it would be devastating for that person. Why should I hold the food establishment liable when she had eaten ice cream before? Is there a possibility that she developed an allergy to peanuts/nuts? She didn’t eat them because her sister was allergic to them. We will never know. Six months later, I was asked a second time if I was considering a lawsuit. Again it didn’t even cross my mind.

My focus has been, and continues to be, on prevention. How we all can work together to stop deaths from anaphylaxis from happening. We need food establishments to have proper training in food safety/handling, better communication between customers with food allergies and all staff members, consideration of procedures to reduce cross-contamination in their establishments, availability of stock epinephrine in case of an emergency, and for added safety measures for those with known and unknown allergies. All of this will go a long way in preventing a severe reaction and/or death.

I don’t want to read about allergic reactions or deaths due to anaphylaxis because of a lack of knowledge or education. I want to read about the good that people and communities are doing to promote awareness. I want to read about food establishments embracing the fact that allergies are on the rise and taking the steps required to ensure they can accommodate all their guests safely, the allergic and non-allergic alike.



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