My nightmares and a public “Thank you, Delta Airlines”

Since my daughter was diagnosed with a peanut allergy at 17 months of age, my nightmares have had a recurring theme. In them, she has a severe reaction and we are away from home.  Sometimes the settings are as mundane as playgrounds where children run wild with peanut butter sandwiches. Other times we are isolated, camping in the middle of the woods, or on a boat. Most often, we are on an airplane.

I’m not a comfortable flier to begin with, but when my daughter is with me, the winged tin can takes on all the qualities of a death trap. I don’t fear water evacuation. I fear the peanuts and cashews I see ground into the floor even after I’ve called ahead to warn the airline of a peanut allergy. I tense at the sound of every snack package ripped open because I have no idea what has been brought on board and whether this will be what sends my daughter’s immune system into overdrive.

On July 3rd, 2016, my nightmare came true on Delta flight 304. At 30,000 feet somewhere between Montego Bay, Jamaica and Atlanta, Georgia, my daughter, who sat next to her brother and her Gran in the row ahead of me, turned and said, “I have a hive. I need a Benadryl.”

I handed her one–this is routine for us–and flagged the flight attendant. I identified our group as the peanut allergy and asked we could get up and clean her seat of residue, even though the fasten seatbelt sign was illuminated. The flight attendant offered to take her to the back and help our group of five find another group with whom we could switch seats.  My daughter walked down the aisle and I offered a reassuring smile from my middle seat.

“Where’s the mom? Do you have an Epipen?” Maybe 30 seconds had passed from when she stood. Two or three minutes since she asked for a Benadryl. I grabbed the bag from under the seat and sprang into action. I suppressed my urge to panic or show my fear. My daughter stood in the back galley, looking pale. The backs of her legs were blotchy with hives, an angry wave spreading north and south with a ferocity I’d never seen.

“Do you want to do it?” I asked as I pulled off the cap.

“I’m scared.” Her voice rarely trembled, but this time it did.

“Okay. I’m going to give you a big hug.” I stood behind her and wrapped my 5’2″ frame around her 5′ one. “On the count of three. One. Two. Three.” She tightened her grip. We counted to ten. Several new faces had joined us in between. I have no recollection of who came when or how they got there. Time bends and narrows in an emergency.  Lots went on while I held her. My husband cleaned seats and surfaces, people changed seats, flight attendants procured enough new in the package blankets for us to make a sort of blanket fort to protect her from contact with potential contaminants and two medical professionals, a nurse and a pharmacist, stepped forward to help monitor my daughter’s vitals and the reversal of the allergic reaction.

I owe a huge thank you to amazing flight crew working Delta 304 on July 3. I didn’t get all of your names, but you are all my heroes. Our lives seemed pretty up in the air, but you kept us grounded, especially Rosanna (P.S – I hope your daughter outgrows her allergy and that you never need to use an Epipen on her). To the pharmacist and the nurse, I thank you so much for your calming presence and for helping to ensure we didn’t have to use the second Epipen. The flight crew called ahead and paramedics walked my daughter off the plane when we landed at Hartsfield-Jackson Atlanta airport. They were gentle giants (seriously – I think they were all at least 6′ tall) who gave my daughter the best care possible. You’d expect in an airport the size of Atlanta that everyone would be in a rush, but they spent more time assessing her symptoms than we’ve sometimes experienced during some urgent care visits.

Thanks, Mary, for looking after your grandson and keeping him calm, while your granddaughter needed medical attention. He said later he was scared, but felt better with you beside him.

I also want to thank my fellow passengers on Delta 304. I was worried you’d be mad that our emergency disrupted the drink service and delayed your disembarking from the plane, but as the paramedics escorted us off, many of you offered well wishes and reassuring smiles.  Your kindness gives me hope.

epipen usedWe may never know exactly what triggered this episode. But it has been a reminder that we must maintain our vigilance, even when we can’t see the allergen. We got lucky this time. She didn’t ingest peanuts. We had the Epipens handy. We had a lot of wonderful people willing and able to help. This may not always be the case.  My nightmares continue.

If you’ve read this far, and are interested in doing more to make air travel, school, and life safer for those with life threatening food allergies, please visit Food Allergy Research & Education. They will get a fat check from me this year.

A fear of death

Recently in Virginia a first grader named Ammaria died after suffering anaphylactic shock.  We may never know the precise details, but the gist of the story is this: Ammaria came in contact with peanuts at recess. She fell ill and was rushed to the school clinic. Someone called 911 but when help arrived, it was too late.  Her life could have been saved if she’d been administered an Epi-Pen.

The night I learned of Ammaria’s death, I tended to my daughter’s hives for the fourth time in three days. I dutifully recorded every thing she ate, drank and played with trying to pinpoint where she may have encountered the peanuts most likely responsible for her reaction.  I breathed a sigh of relief knowing she had life saving medicine at school in case the worst happened. Then she told me she first noticed the hives at school.

I reeled on her. I know she heard the panic in my voice. Her eyes grew wide and fearful as I bombarded her with questions, demanding to know if she told an adult and why she hadn’t. I couldn’t believe it.  My daughter, the one who reads labels, refuses to eat anything if she isn’t sure of the ingredient list and tells adults and children in the area that she can’t be near peanuts, also is the one who didn’t speak up because she didn’t want to bother anyone.

My daughter’s hesitation to speak up could bring about her death.

This is the reality of parenting a child with food allergies.  It’s not just a peanut butter sandwich that could kill her, but also a fear of being a nuisance or forgetting an epi-pen, or an entrenched system of laws that prevent a child from receiving life saving medicine.

Here’s the thing. If Ammaria’s school is anything like my daughter’s, there was a drawer full of epi-pens in the nurses office that will be thrown away, unused, at the end of the school year. Any one of those epi-pens that will become trash could have saved Ammaria’s life, but they were prescribed to someone else.  Laws prevented the school from giving her life saving medicine.  If she lived in my school district, Ammaria would most likely be alive today because local law requires Chesapeake Public Schools to keep two doses of unprescribed epinephrine on site.

If Congress gets its act together, we can make sure all children have access to this life saving medicine, at least during the school day.  S. 1884, also known as the School Access to Emergency Epinephrine Act, would require schools to stock this medicine. The cost per school is minimal, but could save lives of children and staff. Remember, epinephrine helps not just those with a reaction to peanuts, but also deadly bee stings and more.   You can learn more through FAAN’s website.  We require defibrillators, why not epinephrine?

Until this law passes, I’ll keep my daughter’s epi-pens handy. And if I see your child in the throes of an anaphylactic fit, I’ll use my pen to save his or her life.  But please, promise not to sue me.