It was a gorgeous fall day for the Food Allergy and Anaphylaxis (FAAN) walk in Chicago. The kids were busy collecting allergen-friendly food samples and coloring pages. There was music playing and the kids packed the stage to dance together. They felt a common bond with the other children there. There was excitement; they felt special in their sameness. Then the music stopped only to have this afternoon punctuated by a story they will never forget. This fun-filled day was put to an abrupt end as a mother was about to share the very painful and tragic story of her daughter’s death from anaphylaxis. Her daughter had eaten cow’s milk contaminated french fries from the school cafeteria and had a significant delay in the administration of injectable epinephrine. This mother was articulate and overflowing with a strength that most mothers could not possibly possess after the death of a child. She is a warrior against food allergy related morbidity and mortality and she has helped to shape and fashion a much safer world for children with food allergies. This post is in no way meant to detract from her story, from her daughter’s story, but instead it is meant to highlight what her words meant to my children, and what they may have meant to your children, whether you think they heard them or not. Chances are they actually did hear her heartbreaking words and they took them deep into their ever-maturing but tender young minds and they tried to process what this little girl’s story meant for them.
The night following the walk, as I sat on the edge of Milo’s bed, he said, “I had a nice day but I didn’t like that story of the little girl who died from her food allergy. It was the only bad part. It was too sad.” I was surprised he had listened. When I heard the mother begin to tell her story, I tried to distract my 6 and 7 year-old children. I encouraged them to open their Enjoy Life cookies or look through their bag of goodies but obviously that hadn’t worked and their little ears heard it all. I agreed with him that it was a very sad story but I told him that he didn’t have anything to worry about. He fell asleep while I rubbed his head, reassuring him that everything would be okay. And I hoped that this would be the last of the food allergy death talk.
The Monday morning after the walk marched on as usual. The house was hectic and my husband and I took turns begging the boys to get dressed, find their shoes, and brush their teeth. When I showed up at school during the lunch hour, I overheard Milo telling some friends at his table about the walk and how there was a very sad story about a girl who died from her food allergy. This is at a table of children with food allergies. I swept in and reminded everyone that they all make good, safe choices about the food they eat and they have their medications with them all the time and that nothing bad is going to happen to them. They looked at me like they believed me or at least like they wanted to believe me. And I hoped that now this would be the end of the food allergy death talk.
A few minutes later, a second grader with food allergy who walked with us that Sunday, came in the cafeteria. He walked right up to me, no smile in sight, and said, “Dr. Romano, that was a sad story about that girl yesterday.” I called his mom right away to share what he said and what I told him in reply. She told me that after the walk he couldn’t stop talking about how happy he was that didn’t eat food from the school cafeteria and how worried he was about peanuts getting into his safe food. This story had hit too close to home for these young children and their minds weren’t mature enough to process all of this. These kids felt like they knew her. She was in school, just like them. She was allergic to milk, just like them. She loved french fries, just like them. They too may die then, just like her. My friend and I both hoped that this would be the last of the food allergy death talk.
In the car, after picking the kids up from school, Gino told me that Milo wrote about the girl who died at Writer’s Workshop and then shared the story with his class. He also shared that they sent bubbles up to this little girl in heaven, in her memory. He was dealing with this as though we had taken him to another child’s funeral. Gino told me that the teachers looked sad, even demonstrating how one of them turned her lower lip outward in a frown. Milo then stated confidently, “Mom, I will not die from my food allergies.” I quickly and fiercely agreed with him. Then I looked in the rearview mirror and made eye contact with Gino. He looked at me with his huge brown eyes that were clearly holding back tears and said, “But I could die of my food allergies though, right mom?” I answered the same way as I would answer if he asked me if he was going to get hit by a car while crossing the street and die. “There is no way you are going to die from your food allergies, Gino. There is just no way.” To which he sighed in relief.
My oldest son, Sal, shared with me that he had been feeling worried that his brothers would die from food allergy but that he was trying not to worry because he and everyone in our family know how to use the EpiPen. Sal then suggested that he redo second grade to be in the same class with his brothers next year so that he could be sure they would be safe at school. I felt overwhelmed and honestly, a little angry that we had to have this conversation. This wasn’t my plan to teach them about the realities of dying from food allergy in first grade. I felt regret that when the story started that beautiful Sunday afternoon that I didn’t follow my gut and walk away with them. I felt I had let them down, that I didn’t protect them from a truth that they were too young to hear, to young to understand. Then two-year-old Lucy yelled over the boys that it was her turn to talk. We all quieted so she could participate in the drive-home-from-school talk. She said through an enormous grin, “My blallet teachah died fom eating a chocit bah”. For some strange reason, the car erupted in awkward but necessary laughter and then we all changed the subject.
I have never hidden the seriousness of food allergy from my children. If they ask, could I go to the hospital because of my food allergy? I say yes. If they ask, if I eat a food that I’m allergic to could I get really, really sick? I say yes. If they ask, if I have an allergic reaction and forget my EpiPen, could it be bad? I say yes. They have overheard the terms life-threatening. They have heard people in a hush ask me if my children could die from peanuts or milk. They know. They’ve heard about it. They’ve been sick. They’ve been to the ER. They know how bad it can be. I have never told them directly that they could die from their food allergy. I didn’t want to yet. Literature has shown that this age of children do not have the ability to truly understand the concept of death. They are not dying, so I didn’t feel that this was an imperative discussion yet.
As they approach their teenage years, when children inevitably engage in more risk-taking behaviors and when they have a more mature level of understanding of the concept of death is when we planned to have the talk. In the meantime, I have chosen to teach them about how to keep safe from an allergic reaction in the same way I teach them to cross the street safely. To safely cross the street, I tell the children to stop at every alley and street, to look both ways for cars, to make eye contact with the driver before they cross in front of the car, and to continue to look around as they walk through the crosswalk. I tell them to do all of these things to keep them safe and to avoid getting hit by a car. I don’t follow up this conversation with saying “And if you do everything I have taught you, you still won’t be safe enough. There is still a chance that some drunken maniac will careen through the red light up onto the curb and plow you over and you could die.”
I teach food allergy safety the same way. I teach them to wash their hands before they eat. I tell them to only eat food that I have prepared or that a family member who knows about their food allergy says is okay. I make sure that they don’t try food if they aren’t sure what is in it. They carry their injectable epinephrine everywhere they go. They and the adults and teachers and nurses at the school know exactly how and when to use the medication. They know to call 911. What I don’t ever do is follow this conversation up with this, “And if you do everything right, know what you are allergic to, ask an adult to help you make a good decision about the safety of your food, and have your EpiPen with you, something could still go terribly wrong and you could die from food allergy.”
What I am saying is that I prepare my children the best I can in life to make safe choices, like I am sure you all do. But I don’t want to instill in them a paralyzing fear that no matter what, even if they make great choices, death is only a moment away. As an adult, I know that that is true. It is much easier to die than to stay alive. But I can rationalize this, I can make a bit of sense out of this. School age children cannot and now I have proof. They didn’t see the series of errors that led to this little girl’s demise. What they did hear was that she did everything right that day. She knew what she was allergic to, she asked a trusted adult if her food allergen was in her lunch, she told her teacher when she was not feeling well but still she died. That is such a powerless and scary story for us as parents but can you imagine how you would feel if you were the child with food allergies?
So before you use the words “death”, “die”, or “life-threatening”, in an attempt to sway someone into believing how severe and scary your child’s food allergy can be (all of which I have definitely done), or before you are in the company of someone who is presenting food allergy in a way that you are not comfortable with, stop and look around. Can your children hear you? Are they suddenly old enough to understand what you are saying? Do you want them to hear this conversation? Are you ready for them to hear it? Are they ready to hear it? Because I’m pretty sure at ages 6 and 7 that mine weren’t ready. If they are present during these conversations and they are old enough not only to hear you, but also to really listen to you, please do not assume they didn’t get it. Talk to them. My boys luckily shared some of their feelings with me but not all children will do that without being prompted. In fact, if Milo hadn’t opened the door for the discussion, Gino probably would still have been wrestling with his fears alone. You just may need to ask if they have any questions about anything that they heard at the walk or about their food allergies in general.
For four days following the walk, when leaving lunch, Milo had been rushing up to me before I left and making me pinky swear that I will see him at 3. He had been persistent and emphatic about this. As I started to walk out of the school on the second day, it hit me. The reason he was doing this was because the mother at the FAAN walk said that she dropped her daughter off at school and never saw her alive again. He was making me promise I would see him again. A first grader should be worrying about play dates and baseball and his math homework. He should not be worrying about whether or not, when his mom drops him off at school, he will ever get to see her again. So, listen, my sweet little boys, let me do this kind of worrying, in my own, very personal, sacred place where mothers worry about these kinds of things. I will carry this fear, all of your fears, for now. And I promise, with not just a pinky swear, but with all my heart and soul, I will see you at 3. I guarantee.
Most of the readers of this post understood my point of view, regardless of what they choose to do in their home. For those of you who took it as though I do not teach my children to take food allergy seriously or do not think teaching the severity of food allergy is of utmost importance, I wrote this to clarify: As I said in the post, my children absolutely know the severity of their food allergies. As an allergist and a mother, I don’t think anyone should make light of the seriousness of allergic reactions. One of my children has had anaphylaxis to over 10 different foods in 5 years. I don’t think there is a single iota of his being that doesn’t realize the seriousness of this. I am in no way saying to hide the seriousness of food allergy. I am only saying that you should consider your child’s age, developmental stage, and personality before you have the conversation about dying from your food allergy. We are all out to do the same thing: keep our children safe and the way that we do that is based on our children’s needs and experiences, and our own experiences and is up to us as individuals. Some of you mention that you didn’t see the problem. For me, the problem was that the first story my children heard about a child actually really dying from their food allergy was a story in which the child that DID EVERYTHING RIGHT. She knew her allergens, she asked a trusted adult, she told her teachers she was sick and she didn’t get treated in time. This is a devastating, hopeless story. What can a five-year-old learn from this particular story? That no one really knows for sure if the food you’re eating is contaminated with the food you are allergic to? If you get really sick, the adults around you may not realize they need to help you? So all of the teaching and training and explaining and all of the discussions about the potential to die from your food allergy, how would that have helped Sabrina? That was the problem for me, for us. The children know what to do to keep themselves as safe as possible. Their first food allergy death story didn’t not have to be an absolute worst case scenario in which the child did nothing wrong but trust adults to save her life. How terrifying for them. I heard Sabrina’s beautiful mother speak at an adult FAI event several years ago. Her words made a deep impression on the adults at the event. They turned from doubters to believers. It made my friends comment that they would never hesitate to give the epipen to my children or other children they thought were having an allergic reaction. It is an imperative story for school staff, parents, restaurant workers, chefs, daycare providers, etc. This post isn’t about good parenting or bad parenting. It is not about hiding or shielding children from the truth. This post is about timing and empowerment over hopelessness. Thank you for taking the time to read the post and whether you agree or not, I hope that it gave us all something to think about.
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