But I Didn’t Know: What Type 1 Diabetes Looks Like in a Toddler
On a warm Friday evening, Lia noticed her 11-month-old daughter Violet was breathing harder than usual. She did what many parents would do. She went to after-hours GP. The verdict was asthma, or something like it. They went home.
Through the night Violet vomited after a bottle. Her skin turned blotchy and purple. Lia rang her brother, a paramedic overseas, who said the words that would steer the next choice: call an ambulance and ask for a finger-prick test.
The paramedics arrived and checked Violet’s blood sugar. The reading flashed “HI,” so high that the handheld device could not give a number. In emergency, the team moved quickly. Only then did the language begin to surface for Lia: Type 1 diabetes, DKA (diabetic ketoacidosis), insulin. No one had ever mentioned Type 1 in babies. It felt like an entirely new world had opened, overnight, with no map and no pause button.
This is a story about what Type 1 diabetes can look like in a toddler, why the early signs matter, and how a Canberra mum is turning crisis into community and change.
First things first: Type 1 is autoimmune
People often hear “diabetes” and think they know what that means. Many are more familiar with Type 2, which is different in cause and management. Type 1 is an autoimmune condition. The body’s immune system attacks the insulin-producing cells in the pancreas. It is not caused by sugar intake or lifestyle choices. It can begin at any age, including infancy.
Language matters because it shapes how we act. Leah does not say, “Violet is a diabetic.” She says, “Violet lives with Type 1.” In their home they joke gently, “silly diabetes,” to keep the weight of it from settling too heavily on small shoulders. Type 1 lives with the family, not the other way round.
What it can look like in a toddler
No two children present the same way, and not every child shows every sign. Lia’s hindsight list will feel familiar to many parents:
Very heavy or soaked nappies, more frequent wees than usual
Unusual thirst, reaching for big water bottles and “chugging”
Waking overnight for feeds after previously sleeping through
Irritability or lethargy that is hard to explain
Laboured or fast breathing
Vomiting without a clear reason
Fruity-smelling breath or looking “off” in the face
Mottled or blotchy skin, especially if things are escalating quickly
In Violet’s case, the laboured breathing was the first alarm bell. Because it was a Friday night and she had been well only days earlier, the family mistook the signs for a respiratory bug. That is common. Babies cannot say, “I feel low,” or “I feel high.” Parents are decoding a moving puzzle.
Takeaway — Ask for the finger-prick.
If you are concerned, at GP or in ED you can say, “Could you please do a quick finger-prick blood glucose test?” It is simple and fast, and it can rule in or out a serious issue that sometimes hides in plain sight.
No “typical” day after diagnosis
Lia describes life now in two words: constant vigilance. Violet wears two devices, a continuous glucose monitor that tracks her glucose levels, and a tubeless insulin pump that delivers insulin. The tech is extraordinary and life-saving, yet it does not erase the work.
Toddlers do not run on schedules. They taste, they reject, they nap, they sprint, they grow. With Type 1, insulin is often given about 15 minutes before food. If Violet then refuses her sandwich, a calm family dinner can flip to a medical risk. Do you coax, swap foods, add quick glucose, wait for the monitor to catch up, or all of the above? Monitoring data can lag the body by about 15 minutes, which is an eternity when a small child is drifting low. On “daycare days” the decisions multiply because you are coordinating across people, rooms and routines.
Lia says the hardest part is not the injections or the maths. It is the unbroken nature of the load. There are no days off and no perfect formula. Weather, growth, sleep, sickness and play all change the picture.
What worked yesterday may not work today, and that is nobody’s failure. It is simply Type 1.
Early learning is not built for this, yet
When Violet was diagnosed at 11 months, Lia was due back at work a few months later. The question hung in the air: how does daycare work for a toddler who lives with Type 1?
Lia quickly learned that, in her experience, the usual inclusion supports for early learning often do not cover medical conditions like Type 1. There is no consistent, mandated framework for early childhood educators to deliver insulin or manage the specific, dynamic needs of a child on a pump and monitor. Much depends on the goodwill and capacity of individual centres.
Violet’s centre has been caring, curious and willing to learn. Lia and her hospital team created a training video. New staff watch it. Lia provides hands-on training. Day to day, educators and Lia communicate constantly. Even with this teamwork, the responsibility is heavy. Educators are supervising, teaching, toileting, comforting, and then adding clinical judgement across a moving glucose picture. It is a lot.
Lia’s advocacy is clear and practical:
Funded, trained support people in early learning settings who can manage medical needs like insulin delivery and urgent hypos.
Consistent guidance so centres are not reinventing the wheel.
Safety for children and clarity for educators, so everyone can do their core job well.
Her fear is simple: change will come only after a child is seriously harmed. She would rather we act before that line is crossed.
“It lives with us,” keeping childhood in the story
Violet is now three and a half. She is funny, wise beyond her years, and fascinated with pupstruction on TV. She has worn a monitor since 11 months, an insulin pod since 16 months. For her, there is no “before”. She talks about her “pancreas phone” because that is what her devices and app feel like. She has a cannula inserted under her skin every few days. It beeps. Sometimes it hurts. And still, she shines.
Lia’s job, as she sees it, is to protect Violet’s childhood from becoming “the condition.” That means person-first language at home, keeping things light when it helps, and taking Type 1 seriously without making Violet feel like a problem to be solved. It also means paying attention to the mental health side. Food rules and body worries can get tangled with diabetes management. The family focuses on safety and inclusion, not restriction and shame.
Children who live with Type 1 can do anything with the right support. There are athletes, pilots, doctors and tradies living full lives, even our local member for Brindabella Taimus Werner-Gibbings lives with Type-1. Violet’s path is wide open.
For educators and early learning centres
Be proactive. Invite the family to co-create a clear, written plan. Nominate a lead person on each shift.
Train, practise, refresh. Watch the family’s training resources, ask questions, and practise with dummy devices if possible.
Create a calm response routine. Where is the hypo kit kept, who calls whom, what language reassures a small child.
Normalise inclusion. Seat the child with friends, include them in birthday cupcakes and sport. Ask parents what helps, do not guess.
Give feedback. A quick note after incidents helps the family adjust settings and plan.
If you only remember one thing
Ask for the finger-prick. If you are worried about a toddler (or older) who is unusually thirsty, weeing a lot, vomiting, or breathing hard, request a simple blood glucose test. It is quick. It can save precious time.
The gift in the hard thing
Lia would give Type 1 back in a heartbeat. And yet, she says, it has given her community and courage. She has met parents across Canberra, across Australia, and across the world. She has spoken to policymakers, gone on radio, and learned to tell a story she never asked to carry. She now hosts Tiny Types, an online support group for parents of very young children who live with Type 1. Sitting in a circle of people who “just get it” without lengthy explanation has been healing.
Caring for yourself matters too. Lia recently attended a women’s Type 1 retreat, a rare weekend for rest and connection. She returned clearer that you cannot pour from an empty cup.
Even small acts of self-care make the long haul possible.
Listen to our interview via our podcast Canberra, with Purpose available where you get your podcasts.
Learn more about Type 1 Diabetes at Diabetes Australia and you can follow Leah, Violet and their families journey on Instagram @oursweet.typeone. With thanks to Lia for sharing Violet’s story. This article shares lived experience, not medical advice. Please speak with your clinician about your individual situation.
