How to handle every parent's nightmare

"You need to go straight to hospital now" ... words every parent dreads.
"You need to go straight to hospital now" ... words every parent dreads. 

The discovery of a lifelong, life-threatening illness is every parent's nightmare. But as Kerrie McCallum learns, diabetes is not the end of the world.

I will never forget that moment. It was January 25, 2011. The afternoon was hazy and warm, and my husband John and I were sitting in a pizza restaurant in Newtown, in inner Sydney, with our daughter, Marley, 3, and son, Jack, 4 months. It was the first time we'd felt brave enough to venture out with a new baby and toddler for an early dinner.

I remember looking across the table. Marley and John were sitting opposite me on a window sill that doubled as a bench seat. The windows were open behind them and you could feel the energy of King Street as cars thumped past graffiti-covered walls and pedestrians ambled home from a day's shopping. We were the first people in the restaurant, unfashionably early. I should have been happy and excited to be out. But I felt tense and worried.

I had lived with an undercurrent of concern for about a month. Marley's behaviour had become unpredictable. She was irrational and teary, and all she wanted to do was watch TV. She even hated going to the park. She was proving difficult to toilet-train, needing to go constantly, and was aggressive about keeping her water bottle with her at all times. Deep down I knew something was wrong, but it wasn't as though she was unwell - just ... unhappy.

At first I attributed it to having a new baby in the house. Then I wondered if she was bored after a month at home over the Christmas break. Maybe she just needed her old routine back.

But today was unusual. She struggled to find the energy to chew the pizza. Plus she was eating the pizza - she'd always been a fussy eater with a small appetite and would never normally even try a slice. But she kept chewing tiredly. For the first time she seemed almost frail. I decided I'd take her to the GP.

The next day, she headed to our babysitter's house. When I rang, Andrea told me Marley had gone to sleep at 11am. "She seems so tired," she said, sounding worried.

My heart started pounding. I got in the car and drove over, feeling my chest tighten. Luckily I'd made an appointment with our GP that afternoon, so I tried to relax, thinking it would probably be a virus. When I got to Andrea's house, Marley was in good spirits. But she seemed to be moving in slow motion. Small things were too much for her, as though she had no energy. Little did I know that was literally the problem.

We headed to the doctor. "Well, her vitals are good," said the GP. "Let's do a urine test." It didn't take long - Marley constantly needed to pee - and we took the sample back in.

The doctor slipped a little stick in. "Oh," she said.


"What's wrong?" I asked.

"I think you need to sit down," she replied. I looked at her and could see tears pricking her eyes.

"What's wrong?" I repeated.

"Your daughter is developing diabetes," she said. "You need to go straight to hospital now, within the hour. She needs insulin. If you don't feel capable of driving, we can get you an ambulance."

I tried to process the news. I didn't know what to say. How did this happen? No one in my family or John's had diabetes. Marley had never had anything wrong with her. She had always been healthy, John and I were fit and healthy. I didn't understand.

I gathered everyone and staggered back to the car and drove in a daze to the hospital. Jack hadn't slept all day and needed breastfeeding. I needed to contact my husband. We were admitted to Emergency. Apparently severely dehydrated and unable to process any food (which explained her extreme hunger, moodiness and thirst), Marley was hooked up to a UV drip and catheter. She was diagnosed with Type 1 (or juvenile) diabetes - an incurable, life-threatening disease - and our education began.

We saw many experts during our seven days in hospital: educators, endocrinologists, social workers, psychologists and nurses. It was a blur of sleepless nights, breastfeeding, needles, tears, one bout of food poisoning (me) and a loss of freedom we will never gain back. We learnt about adjusting insulin doses and how to inject Marley with needles several times a day, and that she would have to eat precise amounts of carbohydrates (and no more) at set times every single day. We needed to prick her finger to test her blood-glucose levels every 2 1/2 hours, before every meal, every day and then three times through the night. And we discovered that even if we did all this properly, high blood-sugar levels still made her feel terrible and moody, and low levels could result in a hypoglycaemic coma. Not to mention the serious long-term effects if we didn't gain good control.

Marley's immune system had destroyed her pancreas and she wasn't able to process food to make energy. She would need insulin to survive, forever. I woke up wishing it would all go away.

Arriving back home was nerve-racking. There were no more nurses or doctors to fall back on, even though I knew we could call if we needed help. We had a whole new routine. Marley couldn't graze any more. Diverting a hungry three-year-old became tricky. Despite our best efforts, her blood-sugar levels yo-yoed all over the place, and so did her moods. We needed to set our alarm to test her blood through the night: 9pm, 12am and 3am. Add a breastfeeding baby and John and I were both close to breakdown.

I felt isolated and alone. People were sympathetic but didn't realise how consuming it was. "Lots of people have it, so I'm sure you'll be fine," said one, confusing it with the more common form, Type 2. "She'll grow out of it, won't she?" said another. "It's lucky she got it so young because then she won't know anything else." And, "Was it because you ate a lot of sugar when you were pregnant?"

Fast-forward six months and we are getting more confident at dealing with this every day. We know Type 1 diabetes is manageable, though it is difficult and unpredictable at times.

But we don't know what causes Type 1 or why it is on the increase (more than 122,000 Australians have it and all are insulin-dependent for life). "It can and does strike anyone," says Mike Wilson, CEO of the Juvenile Diabetes Research Foundation. "However, it's more common in children in developed countries, and in those with a genetic predisposition. It's not preventable and has nothing to do with height, weight, diet or lifestyle. It's hurtful when parents are asked whether it was because their child ate too many ice-creams."

Type 2 diabetes is more common but up to 60 per cent of cases can be prevented. It is lifestyle-related, and genetics also play a role. More than a million Australians, mostly adults, suffer from Type 2 diabetes with many more undiagnosed. "The main difference is that only five to 10 per cent of sufferers become insulin-dependent," says Wilson. Type 2 diabetes is Australia's fastest-growing disease (275 people develop this form of the disease every day).

I am committed to keeping my daughter as healthy as possible. It takes time and effort and we are not always perfect, but we work hard. We all eat the same diet as Marley - a healthy one. Sound boring? Not really - there is no question this is worth it. Being overweight and not controlling blood-sugar levels can increase my daughter's chances of many serious complications. I want her to have the best shot at living a long and healthy life.

Marley has inspired me. She has accepted needles and blood tests as a part of daily life. She eats her vegies because that's what she gets. Parties are hard to navigate but we manage. She is a funny, smart and beautiful girl who enjoys gym, swimming and dance and attends daycare three days a week.

I worry about her future. What will happen at school? What about camps and sleepovers, or teenage years and alcohol? What if we get stuck somewhere without food or insulin? I worry about her falling into a coma while she is asleep. I worry about friends and future partners taking care of her. I worry about whether she will take care of herself.

I hope researchers find a cure but I don't fixate on it. I'm so grateful she is able to live a full life thanks to insulin. Sometimes I miss the spontaneity of our old life. In the meantime, we do what we can to live in the moment, and live the best life possible.