This content originally appeared on Beyond Type 1. Republished with permission.
By PK Hrezo
Twist of Fate?
It’s coincidental, if not oddly poetic, that type 1 diabetes presented itself to my family and me for the first time just two weeks before National Diabetes Awareness Month — a time we won’t soon forget.
Until that night, I thought type 1 diabetes (T1D) was something that kids were born with. I never thought it could be presented at any stage of life. I’d participated in JDRF walks before for friends and charity, so I knew the bare minimum. It had never been suggested to me by medical professionals that T1D was something all parents should keep an eye out for. Perhaps I hadn’t consulted the Parent Handbook regularly enough. But face-to-face with T1D for the first time, it was clear, I was on the brink of full-on parental guilt.
T1D did not run in our family, but that was the first question the ER doctor asked me while my thirteen-year-old daughter Abby was lying on the ER stretcher, nearly comatose, during a severe DKA episode in Halifax, Nova Scotia on October 19th, 2019.
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I was far from home, away from my husband, family and friends, and I was shell-shocked.
Abby and I had been planning a girl’s weekend to Paris for years, just the two of us, and it was to be the weekend of October 18th. Abby was beyond excited, which now, looking back, is probably what propelled her through the symptoms that we ignored as pre-DKA indicators. But we didn’t know. All we knew was that Abby had been under the weather for about a week – not herself, more tired than usual, and her ear had been bothering her just enough to prompt us to see the family doctor before getting on a plane.
We saw a nurse practitioner who checked Abby’s vitals and said her throat was red, but no ear fluid, and that she’d be okay for travel with some Mucinex. That night, Abby didn’t sleep at all. She woke up and stayed up for most of the night with indigestion. When she looked exhausted the next morning, we chalked it up to a bad night’s sleep.
Once we got to our connection at Chicago O’Hare, Abby seemed to be even more exhausted than before. Looking back, I realize the altitude from the plane ride from Tampa to Chicago had an adverse effect on her already gradual decline into DKA. She was uncomfortable in any position, and very thirsty for sweet, juicy-type drinks. She had an apple juice, a smoothie, a sweet tea with honey – all of these, unbeknownst to me, were contributing to the high sugars that would send her into DKA. I thought I was keeping her hydrated to flush out the virus, but sadly, all I was doing was shoveling more sugars into her bloodstream.
When Abby looked at me during our long layover and said she thought Paris would be a bad idea, I was both glad she’d owned up to it and puzzled by her sudden change. Of course, I wanted to do what was best for her. She mentioned one of our backup destinations — somewhere closer where we could still have our mother-daughter weekend but relax without the hustle and bustle of a busy city. We were already part of the way to another place, so we chose a pleasant B&B in Halifax, where it’d be autumn and beautiful. I made our arrangements and we headed to the next gate.
If I could redo that day, I wouldn’t have put her on a plane to Canada, but that doesn’t mean I wouldn’t have made a different mistake. I might have booked a room in Chicago, so we could rest and she could sleep it off, which could have been fatal, since I still didn’t know she was in near-DKA.
I called my husband and told him how Abby was behaving, and that we’d changed plans. He was surprised, but agreed she likely just needed rest. That was also about the time doubt squirmed its way into my mind. People were beginning to stare at her. She was stumbling to the bathroom, and she just kept saying she was tired and needed to sleep. I was eager to get out of the airport and settle down somewhere so we could get back to normal. Little did I know, that normal had left us for good.
We pressed on and boarded the aircraft, and after about thirty minutes into the flight, my mommy senses went full-on haywire. What had I done? Something was wrong with Abby — I had no idea what, only that something wasn’t right, and it was too late for us to turn around. Tears welled in my eyes and I stared out the window wondering how I could’ve made such a big mistake.
Completely in the Dark
Abby could hardly hold her cup of ice she’d been munching on. She was dropping everything, and I was getting frustrated, because I’d never seen her that way, and I knew something was happening that she wasn’t telling me. “Talk to me,” I kept saying to her. “I don’t understand what’s going on.”
But Abby didn’t understand what was happening to her either. She complained that her lungs were hurting. Her lungs? I didn’t know if she was exaggerating or if she was having an allergy attack. How did all of those symptoms measure up to exhaustion and a virus? It didn’t make any sense.
Abby got up to use the bathroom again and was gone for quite a while — this is what I now know as T1D’s excessive peeing symptom. I was just about to go check on her, when she returned to our seat and laid over me. Her voice was barely audible when she complained again of her lungs hurting.
“Is there a doctor here?” she asked me in hardly a whisper.
“No,” I told her calmly. “But we’ll find one when we land.”
My nerves spiraled. I was, without a doubt, the worst mom ever. I decided that as soon as we landed, I’d call 911. We were halfway there. I held Abby as she laid over me in the row. And then she began to breathe heavily and rapidly.
I rubbed my hand up and down her arm. The stark difference between my hand temperature and hers was so alarming that I knew I couldn’t put it off any longer.
“Wait here,” I told her, and I beelined for the back of the plane where the two flight attendants stood in the galley.
“Can you see if there is a doctor onboard?” I asked. “I think there’s something wrong with my daughter.”
Without hesitation, the flight attendants sprung into action and all the lights on the aircraft came on. While everything was moving in a blur for me, I returned to Abby and a passenger seated behind us, Nick Wasser, popped up as the announcement was made and identified himself as a nurse.
I explained Abby’s symptoms and everything up to that point, and a minute later, two more professionals appeared: Dr. Peter Laureijs and his wife, Beth, also a nurse. The flight attendants had oxygen and medical kits and they moved the passenger from the bulkhead row, so that Abby could be laid there on the floor. The doctor and nurses attended to her with great care, administering oxygen and checking her vitals.
I whispered a prayer and asked God for courage to get through whatever was to come, and that He might save my daughter. I remember very well, the moment when the woman in the adjacent row, Nick’s wife, Johanna, reached her hand over and lay it on mine, with tears in her eyes and said, “If you need anything, I’m right here.” The flight attendants checked on me throughout the remainder of the flight and made sure I was okay. They were in communication with the flight deck, and the pilots opted not to divert, but instead speed up the plane to get us to Halifax sooner, where IWK Health Centre would know how to care for whatever was wrong with Abby.
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They’d administered an IV by then, and that’s what saved Abby’s life, because unbeknownst to me she was dehydrating by the minute, as her bloodstream was filled with all that sugar that couldn’t be processed.
An ambulance waited on the tarmac when we landed. I could see their flashing lights out the window, and an announcement was made for no one to move until the EMTs had boarded and retrieved Abby. We started moving through the airport and Border Patrol gave me temporary paperwork and told me to call later after we knew what was going on. They wanted to make sure Abby wasn’t contagious, rightfully so, and that we weren’t bringing disease into Canada. At that point, we still had no idea what was happening.
On the ambulance, the EMT said her glucose level was 30 mmol/L (540 mg/DL). That didn’t mean anything to me. I said she’d had a lot of sweet drinks and nothing really to eat, so it was no surprise they were high. I was so naïve to the symptoms of T1D.
Learning the Ropes
The EMTs and ER staff that met us at IWK were all top-notch professionals with such warmth about them, that I never once felt alone, nor judged for my epic mom fail. While Abby was transferred to a bed and hooked up to all kinds of tubes, the ER doctor asked me a ton of questions, one of which was if diabetes was in the family.
“No,” I said informatively.
“This is diabetes,” he said. “I can smell the ketones from here.”
“Ketones? What the heck are ketones?”
A word I’d later come to be acquainted with on a much deeper level. T1D had just blindsided me in a T-bone collision. Welcome to your new life. How had I not known? How had the doctor back home not identified it? Did this happen to other kids Abby’s age? Why did it wait so long to show up?
I stepped out and called my husband, and he, too, was in denial at first, insisting she’d probably just had a lot of sugar. Then I mentioned what the doctor said about smelling ketones, and it hit Nate like an anvil.
“Holy cow!” he said. “That’s what I smelled yesterday, remember? I said you need to brush your teeth because your breath smelled, and I thought it was you. I can’t believe I didn’t recognize it!”
Nate is a fire chief in Tarpon Springs and has thirteen years of experience in the EMT/first responder profession, and he has run across T1D patients a number of times.
Abby was admitted to PICU a few hours later where she was tended to by sweet, caring nurses for the next forty-eight hours, and where I would begin googling words and terms I’d never known before, in hopes of learning a lifetime worth of information within a couple of days.
Every time an ICU nurse would come in, I’d fire off questions, one of which being: “Does this type of thing happen very often?” One of the nurses said that in the last three months, they’d had eight cases of pediatric DKA where the parents had no idea that their child was T1D. After ICU, we moved to a room on the children’s ward, where we were introduced to managing T1D on our own. I was trained to use a glucometer and give insulin injections, and how to count carbs.
Making Sense of It All
I posted on Facebook when we finally returned home to Tampa. Sharing the signs of DKA with other parents seemed a priority, in hopes others could learn from my mistake. After my Facebook post went viral, I was contacted by so many other T1D parents and patients who have similar stories. So many of whom were turned away from doctors and ERs who also thought nothing was wrong.
I was an anxious ball of nerves when Abby and I finally received the okay to travel home to Tampa, because I’d be in charge of her insulin doses on my own for the first time. Since I learned dosages and glucose readings in Canadian measurements, I had to retrain my brain to switch over.
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The IWK nurses stayed in close contact with me throughout our journey home and advised me on what dosage to give after each blood reading. We had a doctor’s appointment the following morning with our new Tampa-based pediatric endocrinologist, and after one delayed flight to Newark, and another delayed flight to Tampa, we muddled through our insulin injections, and were able to get home and begin our new normal.
Together, our family is planning healthier food options with fewer carbs. We are making Abby’s lifestyle change our lifestyle change, we’re all watching our sugar intake. Once at home, I realized how fortunate we were to get help when we needed it, and I realized I didn’t know one of the nurse’s names from the flight. I also wanted to find out the flight crew of UA5596 so I could thank them. I made a Facebook post one morning asking others to help me find them, and I received an overwhelming response.
The post received almost 6K shares from people eager to pass on Abby’s story. The T1D community embraced me in a way I’ll forever be grateful for. Instead of feeling alone with this condition, I feel a part of something so much bigger than a crummy auto-immune disease, and I know a wealth of resources and support are waiting online should I need it.
While Abby and my weekend had not been the one of culture and mother-daughter bonding we’d hoped for, we found something else equally important. We learned that we are both stronger than we think, and that love and faith will get us through anything. We gained a new respect for life and its fragility, and humanity proved it’s still full of compassion. Since that fateful October night, Abby and I have been invited into a community of fellow T1Ds we never knew existed, and we’re reminded that there is strength in numbers, and that people truly are eager to help when given the chance. We are not alone.