All I kept thinking was “Why? Why? Why?” and it has remained on my mind daily ever since.
Last month, I had the pleasure of meeting someone exceptionally courageous. Georgina Cornago Cipriano and I ended up at the same table at the Allergy & Asthma Network Summit and it felt like we were destined to meet one another. I had arrived late to the Summit because of work, but was thrilled to have the opportunity to be there for the afternoon. When I sat down, I asked the other women at my table if they would mind introducing themselves and sharing why they were at the Summit. The other women were either school nurses, worked in allergy organizations or were involved with allergies through their careers. When it was Georgina’s turn, she shared briefly that she had lost her son two years ago to an anaphylactic reaction. I remember thinking, “Wow, how is she here? She is incredibly brave.”
An announcement was made that it was time for lunch and everyone stood up to get in line and relocate to tables on the opposite side of the room. After speaking to the caterers to find out what would be safe for me to eat, I saw that there was a seat open next to Georgina and sat down. I was nervous, but I figured if she was here, she was brave enough to share her story. “Would you mind telling me what happened to your son?” I asked. She then shared with me about Giovanni. As she was sharing her story I was transfixed. All of these years of having life-threatening allergies, I had rarely met anyone with allergies, never mind someone who had lost a child because of them. When she finished recounting what had happened, I felt overwhelmed by how easily that same scenario of waiting to use the epinephrine while rushing to the hospital has happened to all of us with anaphylactic allergies. I know that my mom and I have done that before, and thankfully it worked out okay, but it could just as easily not have worked out. My mom could have been Georgina, just like any allergy mom could be. To use epinephrine immediately, or to rush to the hospital trying to beat the reaction. It’s a road most of us with severe allergies have traveled.
After the Summit that day, I got in the car and immediately called my mom. I had to tell her about meeting Georgina. I knew she would feel the same way, that what had happened to Georgina and Giovanni could so easily have happened to she and I. It is that scary. It is that easy to “not know” in the moment. My mom conveyed to me her deep pain and the heartfelt sisterhood she felt with Giovanni’s mom.
For myself, I know fear and denial have both overcome me in the past during a reaction. Fear is such a powerful emotion. In fear, I have easily convinced myself that I am okay. That I will feel better when the antihistamine kicks in and that I don’t need to go to the hospital. Fear does not often bring rational decision making. In fear, I could easily not take the epinephrine right away and lose my life. This could have been me. Anyone with life-threatening allergies could be Giovanni. Any allergy mom (or dad) could be Georgina. This could happen to any of us.
To make the decision to give epinephrine or to not give epinephrine can be incredibly difficult. More often than not, there is no clear determination between use the epinephrine or wait and see. Every instance is different and we can’t rely on it to always be an obvious decision. Each reaction is its own unique incident, and dependent on so many different factors. This is why everyone needs to speak with their allergists to have their own action plans. It needs to be as clear as possible, so when a reaction does occur you know exactly what to do. From what I’ve heard and read from numerous allergy parents, it is a struggle we all face, both parent and child.
The protocol also has changed over the years. When I was growing up, my mom was generally advised to give antihistamine first. Over the years and especially more recently, it has been evident that if there is any question in your mind, give the epinephrine. If you wait, it could be too late. More and more often lately, there have been these heartbreaking examples of how waiting on this decision can lead to loss of life. Despite this, I know deep down how difficult it has been for me to make the decision.
Georgina and I have stayed in touch since meeting. It honestly felt like fate that I was put at that table to hear her story. Over the next few days after meeting, I read the articles about Giovanni, looked at the photos of her handsome, handsome son who looked so sweet, spirited, and full of life. I asked myself repeatedly, “How can someone so young be taken like that?” and I thought how it could have been me. How it could be anyone.
I wish I had known Giovanni. I feel like I do through Georgina. Through the posts she writes, through the photos, and through the memories people share about him. I can’t imagine the grief and loss Georgina goes through on a daily basis, and the strength she has within herself to push through that to send a crucial message she knows first hand.
I wanted to write this post because everyone needs to know her story, her message and what an impact meeting her has made on me. I know as someone who has lost some very special people in my life, that it can be much easier to push the hurt away to try to avoid the pain. To be someone that takes that hurt and puts it into energy to share a message that will help others, takes some serious courage. I know that the next time I question what to do during a reaction, I will hear Georgina’s message to use the epinephrine and not to wait. It is that important. Thank you, Georgina for sharing your story and spreading your message. Your story has helped save lives.