A week ago he laid beside me, holding tight onto my wrist and whimpering as he slept. I watched as his chest rose and fell, moving with every exhalation, keeping a hand on his strong yet tiny pulse. With every breath he took I continued my silent prayers, begging God for his health and safety. For healing and wholeness. That he would make it through the night and the 72 hours that followed.
It had happened earlier that day… I’d decided some mommy/baby time with friends would be good for the soul, so we ventured outside of our safe haven and into the world. I had called ahead of time to make sure that he would be safe. As we arrived, I held him on my hip and asked again – “This is a food-free environment, correct?” The man at the counter replied, “Yep! There’s absolutely no food or drinks in the gym.” I breathed a sigh of relief, and set his diaper bag and epi-kit by the door before starting kiddy gymnastics.
That morning was an absolute blast. He played, ran, made new friends… He was a normal little toddler. We giggled and bounced and didn’t have to explain that he was any different. Because he isn’t. He just happens to have a condition that requires a significant amount of oversight and vigilance, particularly on the part of his parents. He’s only a toddler now, but one day soon he’ll understand that he has life-threatening food allergies.
As we left the play area I leaned over to pick up his diaper bag and fish my keys out. He was holding onto my left leg and it literally took two seconds to locate my keys and turn back around. But in those two seconds he happened to reach out, dig his hand into another mom’s diaper bag, and start chugging from her child’s sippy cup. He was sucking fervently, trying to get every drop… I snatched it out of his hand and started running through the gym like a whirling dervish, asking “Is this yours? Is this your cup? Pardon me, is this yours???” I probably should have opened the cup to see what was inside, but I was too scared to hear the truth… I finally located a tall, fit, woman that said “Oh yeah, that’s ours. Sorry about that.” “What’s in it? What is it?” I demanded. “Oh, it’s just milk,” she replied… In that moment my heart sank. “Milk? What kind of milk?” (Wondering if perhaps it was soy milk.) “Oh, it’s just whole milk. But there’s not even that much in there. There’s only a few sips.”
I honestly am not completely clear on what happened over the next couple of minutes. I remember snatching him up and running out of there as quickly as I could. I didn’t know where I was going – all I knew is that the timer in my head had started ticking, along with the woman’s words, mixed in with my own internal dialog. “There was just a little bit. Maybe he didn’t get any? Maybe he’ll be ok? He’s never ingested dairy before, so maybe it won’t be as bad as we’ve feared.” I started driving towards town as quickly as I could, in the direction of the hospital. I called my husband, Chris, and said just a few words. “He got a sippy cup. Going to the hospital. Come now.” He ran out the door of his office and into the parking lot before he called me back and convinced me to pull over. “How will you be able to monitor him if you’re driving?” By then I was already on a fly-over to the bridge into town and there was nowhere to pull over. Then I found a park on the side of the road, let Chris know where we were, then called my friend Kirsten who not only happens to be the mother of a severely food-allergic child, but a RN and the co-leader of our regional FARE support group. I knew she was at a funeral because I’d spoken with her just an hour before. I’m not even sure why I called her, except I needed some reassurance and guidance from someone that had experienced anaphylaxis before.
Upon realizing that my call was urgent she stepped outside the funeral and walked me through the food allergy action plan that I knew so well. I knew what it said. I knew what to do. I just didn’t want to over-react and inject him unless it was completely necessary. As I pulled him out of his car seat I realized that in the five minutes since he’d ingested the milk he had gotten quiet and lost all color in his face. “I think he’ll be ok. Maybe he’s just tired. Maybe I’m over-reacting.” Kirsten reassured me, but stated confidently “You should probably inject him. It happens quickly…” All of a sudden he went grey and still and then started vomiting profusely. The vomiting turned to gagging and then foaming at the mouth, which told me that he was beginning to struggle to breathe. I got him in position as my friend calmly reminded me of where to place the injection and counted slowly from one to ten, before changing her tone and saying “Now hang up and call 911!!!”
I had a call script for the dispatcher and knew exactly what to say. I’d practiced it and prayed those words would never have to be spoken, but when they were I was left standing alone on the side of the road, trying to comfort a child on the brink of death. I begged the EMS responder to please let me know if they were sending an ambulance and how long it would be until they arrived. (Their response was shameful at best, but that’s a story for another time.) Around the time it became clear they did not realize the severity of the situation, the call was somehow disconnected seconds before Chris’ truck pulled up, spitting gravel behind it. I told him “I don’t think they’re coming. We need to go.”
We raced through town, calling the EMS again on the way. I sat in the back seat, monitoring our son’s breathing and feeling his pulse, listening to Chris’ instructions as he drove rapidly but methodically. In that moment I was amazed by how calm he remained in the midst of chaos and also appreciative of the medical training he’d received on the job. During that brief ride I literally watched James come back to life. His color returned, his breathing stabilized… Chris hit the accelerator and James looked at me with big blue eyes and smiled, saying “Woahhhh!” I couldn’t help but laugh and tell Chris “He’s ok. He’s going to be ok.” I kept the epi on-hand in the event I had to re-administer it, while calling our allergist to apprise her of the situation. She asked a series of questions and once we were sure his airway was clear we bypassed the hospital and drove across the street to her office. After taking his vitals, she administered steroids and continued to monitor him for the rest of the day. James continued to perk up, but still looked a little dazed. Then he gave me a dirty look, then looked at the doctor and pointed to his bloody pants (from the injection), saying “Momma – BOOBOO!”
By that evening, you never would have known anything had happened, if it wasn’t for the booboo on his leg he insisted on showing everyone and the look of him being completely and utterly drained. Anaphylaxis took a lot out of him and he was exhausted for several days afterwards. But it worked. The epinephrine worked.
What I was not prepared for was the aftermath of anaphylaxis. I thought I knew how to keep him safe. What to feed him, how to protect him. Our house is 100% free of his allergens. Because he is so little and has little understanding about his condition we are incredibly careful about who he interacts with and how. (“What did they eat? Did they wash up? How long ago was their last meal?”). But what happened in our situation was a seemingly freak accident. He was holding my leg. I had him. He was safe. Until he wasn’t. He didn’t understand that all it takes is just a sip… Now we know with certainly that that’s all it takes. It’s not my fault. I can’t live with any regrets and what if’s. He’s sleeping soundly in his bed tonight because I responded quickly. I saved his life.
Knowing you did everything in your power to protect your child and really knowing it are different though. After laying awake watching him sleep all night, the sun rose and I allowed the tears to roll down my face. The most concerning window for secondary anaphylaxis (6-10 hours) had passed and I finally allowed myself to begin to process everything.
What happened to James has not only affected he and I, but our whole family. His big sister. His loving daddy. His grandparents. Our neighbors. It has hit everyone close to the heart and we are incredibly grateful to so many for rallying around him and us. While the anaphylaxis itself was difficult, what nobody had warned us about is the emotional toll it would take on the entire family unit. I was married previously and lost my husband suddenly, so I understand trauma and loss. But nothing in the world is scarier to me than the thought of losing a child.
I’m not sure what the future holds for all of us. I don’t know how we’re going to handle him going off to college… Or kindergarten… Or even that birthday party this weekend… I know it will get easier as he gains in his understanding. After great discussion and debate with a wise friend, I decided to share this story so that others may learn from it. As crazy as it sounds, I feel like God allowed this to happen so that no child shall die in this area from a delayed EMS response. I am going to use this experience to not only educate friends and family, but am hoping to speak directly to our local medical community after receiving training from FARE at their national conference next month. I don’t want anyone fired. I don’t want to cause a scene. I just want everyone to understand that sometimes a sip really is all it takes. And I want to encourage other food allergy parents to a) ALWAYS be prepared and b) link into a good support group.
My hesitancy to share our experience has been for several reasons. First of all, I knew that writing it down would make it real. Looking at his sweet smile it’s easy to pretend nothing happened. Secondly, I wanted him to control when and how these stories are shared. Also, I’ve come to realize that I fear criticism from others, questioning my actions in the heat of the moment. Questions from well-intentioned people about whether his allergies are because he took antibiotics as a newborn (he didn’t) or because I kept the house too clean (definitely not the case) or because I either loaded up on certain foods or avoided them (neither is the case) or even if there’s a history of food allergies in the family (there’s not). This condition is just some freak genetic fluke, just as this incident feels like a freak occurrence – a series of unfortunate events that fortunately had a happy ending. Epinephrine saves lives and it saved his life. All it took was a sip and a shot, some amazing physicians and friends, and lots of prayer. My baby boy is alive.