My husband and I had the privilege of being honored this Saturday, October 22, at the Food Allergy Initiative’s 4th Annual Chicago Benefit (www.faiusa.org). We were in the presence of so many incredible people and were moved by the generosity and empathy of those in our company. I wanted to post the speech I gave at the event because I think it will serve as a good introduction to my family and me.
“I started my first year of Allergy/Immunology fellowship in 2005, we had a brand new baby boy at home. Before I ended my first year of fellowship, we had three baby boys at home! If having 3 kids in 13 months wasn’t enough to make the remainder of my fellowship a challenge, one of the boys, Gino,* was showing early signs of allergic disease. He had terrible eczema that kept him up crying and scratching most nights, he would get hives constantly, and he vomited every single time he ate.
After months of denial, I finally had Gino tested for cow’s milk allergy. As the diagnosis fell from my allergist’s lips, the same diagnosis that so often fell from mine, it struck me how it felt on the other side and the strike was powerful. The very field I was preparing to dedicate my whole life to was betraying me. That was the moment when the tables turned on me. I was on the wrong side of that appointment, a side I never dreamed I would be on. I was not the allergist that day; I instead became the mother of a child with food allergy.
Soon thereafter, I would become the mother of not only one but three children with life-threatening food allergies to multiple different foods including milk, egg, soy, wheat, green pea, beans, mustard, sesame, peanut, tree nuts, chicken, fish, shellfish, red grape, cranberry and banana. It probably would have been easier to tell you what they can eat!
I would like to share two stories with you that highlight the seriousness of allergic disease, the unexpected nature of reactions, the ultimate importance of epinephrine and the incredible need for a cure.
I remember it was a pretty summer afternoon and I was on call so my mom, dad and sister, who are an incessant support to us, stopped by to help. I was so excited to see the boys when I got home from work I let them eat dessert before dinner. I gave them each a tiny bite of a milk-free, wheat-free cookie I had made the night before. It was not even a minute after their first glorious bite when my mom nervously brought to my attention that Milo’s* lips and eyes were swelling and he had hives around his mouth. My heart sunk fast. I grabbed some Benadryl® and as I gave him a dose, my dad yelled out my name, and he said it in such a way that I knew something horrible was happening. Gino was lying still on the floor. My dad picked him up and ran over to me. When he handed him to me, I felt his weight. That is the strongest memory I have of that moment, his weight. He wasn’t holding any of it on his own, he was completely limp in my arms and when I sat him up and screamed his name to get him to look at me, his head just slumped forward heavy against my chest.
He began to look dusky and blue around his lips. I screamed for an Epipen, Jr®. And even though I can put teeny tiny umbilical lines into two pound babies without so much as a tremor in my fingers, with my own child, I was shaking so much that I could hardly remove the gigantic gray cap from the Epipen, Jr®. When I finally did, I put into his thigh with a thud. While I counted to ten, he began vomiting profusely. His nose was bubbling out mucous and he was turning more and more blue. I could feel myself losing him and I believed that he might be dying in my arms. Dying from a cookie that most of the world would find nothing but joy in. Dying from a cookie. Specifically dying from the egg in that cookie. A few minutes after the injection of epinephrine, his coloring began to return and I felt this overwhelming sense of relief and gratitude as he started to open his eyes again. That night in the hospital I remember crying and clutching to Gino for dear life and thanking God that I could.
We have unfortunately had many similar reactions to food in the past five years. Most recently our baby, Lucy, * had anaphylaxis within 30 seconds of drinking her first ounce of cow’s milk based formula at 4 months old. Her face began to swell almost immediately. She was retching and coughing. My ever-smiling baby was growing distant and weak. She was too small for an Epipen, Jr® so I immediately called 911. When we got to the ER, she began to have more difficulty swallowing and she was starting to drool.
The underside of her tongue was so swollen that it looked like she had two tongues, one stacked on top of the other and the back of her throat was beginning to swell so she had just a narrow passage through which air could flow. Two injections of epinephrine later, she started to look better, the swelling was going down and I could actually get her to smile and when she finally did smile, that was a smile I will never ever forget. It was a smile that brought us both back to life.
I share these stories to demonstrate the urgency that D.J. and I have to find the treatment for food allergy. We are not alone in this urgency; we are in the company of millions of other people. We want Gino to be able to eat the pizza at his friend’s birthday parties. We want Milo to be able to eat a doughnut in the morning when he spends the night at my parent’s house. We want Lucy to be able to eat cheese to her heart’s content. We want Sal*, our son without food allergy, to be able to share these experiences with his brothers and sister and by doing so, he will be able to carry less worry and less burden. We want a treatment for this disease so that all people with food allergy can eat what they want, when they want, wherever they want without the fear of having a fatal reaction. That is their reality and it is a reality that desperately needs to change.
FAI supports the research that will soon find the treatment for food allergy. With your generous donations to FAI, we are one step closer to this wonderful day. And when that day comes, and I believe it will, we’re gonna have one helluva dinner!”
One of our friends, who already knew about our children’s allergies, came up to me after the speech and said, “I knew the kids had food allergies, but I guess I really had no idea what it was all about.” So it got me thinking… As the holiday season approaches, families with food allergies do a whole lot of education. Some family members clearly get it and go out of their way to keep the celebrations safe and there are, of course, others who just don’t get it… yet. A family member of ours once said to me that she knew the boys couldn’t eat peanuts but then asked, “What about peanut butter?” Education is the only good answer to this lack of understanding but it sometimes feels like we have run out of ways to educate. Please feel free to use this post as a tool to continue these often-difficult conversations. Sometimes using another person’s words takes a little of the burden off of you. And sometimes a picture is worth a thousand words.
Please feel free to leave comments!
*Names have been changed to protect children’s identities.