My Daughter Has Type 1 Diabetes: How we missed the symptomsDonna Ceparano
The strange vomiting starts during another overcast day in Sweden. With three kids, I had weathered plenty of stomach viruses. But something is different this time. My two-year-old daughter was smiling and laughing two seconds earlier. What she threw up looks like a fully formed marshmallow, and her breath smells like cantaloupe.
Could this be some rare virus unique to Scandinavia? Surely, if there were such a thing, I would have heard about it from one of the mothers in our community of ex-pats.
I have been known to overreact when it comes to my children’s health. “Waiting it out” is not in my vocabulary. Why, then, am I not rushing to the emergency room? Maybe I’m skeptical about what kind of care we’ll get under socialized medicine. Or maybe I know deep down that this time it isn’t my overactive imagination but a potentially serious illness.
I am paralyzed by my own thoughts: Will the hospital staff speak English? Will I be waiting for hours only to be told to go home and give her Pedialyte? Do they even have Pedialyte in Sweden?
My mother calls long distance from the states. Since she has long functioned as my “personal trainer” in irrational anxiety, I try to hide the truth from her.
“What’s wrong with Alana?” she asks, panic rippling through her voice.
I cover: “It’s nothing. She just threw up some milk.”
“What’s going on? Is she okay?” She’s escalating.
“It’s not so bad,” I hear myself lie. “It smells kind of sweet.”
“What did she eat? Does she have a fever? Was she exposed to any other sick kids? I knew you shouldn’t move over there. Do you even have a doctor you can call? What are you going to do? You should do something.”
I should hang up now, I think.
I extract myself from the conversation, take Alana home, and continue to manage her illness with plastic sheets, nibbles of toast, and lots of Gatorade (there isn’t Pedialyte in Sweden). She vomits it all back up, seeming more miserable as the night goes on. Finally, at four in the morning, she falls asleep.
Even lying clammy and drawn in my bed, Alana is beautiful. Her eyes are sky blue, and her hair is as yellow as a dandelion, with tresses that sometimes billow so far away from her head that it looks as if she could lift off the ground and fly away. Don’t leave me, I think as she lies there. I waited so long for you.
When she finally wakes up the next afternoon, I am hopeful that it’s over, another horrible gastroenteritis survived. But something isn’t right. Her cheeks are flushed, and her breathing is shallow. “Mommy,” she whispers in my ear.
I call my husband at work.
“Is she done throwing up?” he asks.
“Yes, but she seems really weak and her breathing is funny. I’m scared.”
“Stop blowing this out of proportion. I have a meeting. Let me know how you make out.”
I can’t think of what to do except call my mother. Since I am prepared for a hailstorm of hysteria, I’m surprised when she is almost Zen-like. “You should pick up the girls and go to the emergency room there. They’ll tell you what’s wrong. I’ve read that the Swedish medical system is one of the best in the world.”
I don’t know if she actually read this, but it’s exactly what I need to hear to muster the courage to act.
I pick up my other two daughters and drive to Stockholm’s Barn Akut, which provides 24-hour emergency care to children. I carry Alana on my hip. She can’t afford any major weight loss; she’s lighter than some of my purses.
I burst through the doors expecting a mob of coughing children and an irritated, overworked staff. But there is no one in the waiting area. I knock on another door, and we are immediately taken into a friendly exam room with nursery rhyme figures stenciled on the walls. A nurse softly asks me questions as she examines a half-sleeping Alana.
“She’s dehydrated. Do you think you can get her to drink this?” she asks. She hands me a fizzy tablet floating in a glass of water and tells me she understands how scary it can be to get sick in a foreign country. She says I should see some improvement in Alana in minutes. I suddenly realize I’m breathing a little freer.
Then my husband arrives and, when he sees Alana’s drawn face and the circles under her eyes, I can tell he finally believes she’s seriously ill. This should make me feel better, but it doesn’t.
We are taken into an exam room where we meet the doctor on call. He expertly scoops Alana onto the table and looks her over. She is so worn out that she doesn’t fight at all when he draws blood from her finger. After only 60 seconds, we have a diagnosis.
“It’s Type 1 diabetes,” the doctor says.
“How can you know that from one finger prick?” my husband asks.
He gives us a list of symptoms that we could have never imagined would turn out to be diabetes: rapid breathing, a mottled rash on her face, the fruity smell coming from her pores, a diaper overloaded with urine, and excessive thirst.
“The vomiting is a sign she’s entering ketoacidosis, which comes from lack of insulin,” he explains. “And her glucose reading is 300 points above normal. This is not a borderline diagnosis … I am very, very sorry.”
Suddenly I am flooded: with grief for Alana, who doesn’t have a temporary virus but the burden of a lifelong illness; with anger at my husband for challenging my intuition and at myself for allowing it; with gratitude for my mother’s unexpected rationality, the kindness of the nurse, and the authoritative competence of the doctor; and finally with fear as it dawns on me: I don’t know how to take care of my daughter anymore, and all of our lives have changed forever.
That was more than three years ago. While those first months were a huge (and occasionally nerve-wracking) adjustment, these days, sometimes we forget Alana even has diabetes. She’s an active, athletic five-year-old. Injections are as much a part of our daily routine as brushing our teeth or bathing. She’s as silly and smart and mischievous as any of her peers. That’s not to say that it isn’t a frustrating illness – an apple can cause a 100-point jump in her glucose level one day and a 200-point increase the next. Sometimes she drops dangerously low while sleeping, so I have to wake up and test her in the middle of the night. But it’s getting easier all the time.
As for me, I have come a long way since the days I cried while giving her a shot. I’m able to read her symptoms and anticipate whether she needs insulin or food before she starts to feel unwell. If she has symptoms that require a call to the doctor, or even a visit to the emergency room, I’m able to stay calm and know that she will ultimately be okay. In fact, the ironic truth is that having a child with a major illness has helped keep my anxiety at bay when any of my kids are sick. I know I can trust my instincts, and I know a true emergency is a rare event. And whenever I look at Alana, I’m no longer flooded with grief, anger, or fear, but with overwhelming thankfulness that she is here.