Belfast Telegraph

Thursday 31 July 2014

‘Our girl will have diabetes all of her life’

Maud (left) with mum Anne and her sisters and brother

When mum-of-four Anne Dunlop’s daughter fell ill, she thought it might be linked to the family’s move from here to the Middle East. But she was wrong ...

Maud was eight and she was off-colour. “I feel tired,” said Maud. I wasn’t very sympathetic. “Stop waking up so early in the morning,” I said. Since she was born Maud has woken at six, and has woken her brother and sisters at six, and has woken me at six, and our entire household is up at six every morning, when eight o’clock would do perfectly fine.

Maud didn’t argue with me. She didn’t even answer.

“I feel tired,” she repeated.

She’s infuriating that way.

“It’s probably her age,” said my mother. “It’s growing pains. Is she growing?”

“Growing so fast that the weight is falling off her.”

But in quite unusual places. Like her shoulders. And then there was the staring — not quite a trance, just a vagueness.

Maud was drinking a lot of water. But we’d just moved to live in the Middle East, and it was very hot, compared to Ireland, so that would |account for all the water drinking, wouldn’t it?

When she wet the bed the first time I was a bit surprised. She is eight after all. But these things happen. So I changed Maud’s sheets and turned over the mattress and didn’t really remark on it. The second time it happened I began to worry that she was disturbed about something — suffering a mental anguish — isn’t that why children wet the bed in books?

Mummy said: “Of course she’s disturbed. What can you expect? You’ve dragged her halfway across the world to a new school and a new country. She’s missing her friends here in Ireland and her family. She’s missing me. There’d be something wrong with her if she wasn’t disturbed.”

I decided not to phone home for a while. I was trying to get my novel finished. I was up in the middle of the night in my office on the roof of the house, writing from midnight to three. Downstairs on the floor below I could hear Maud’s nocturnal ramblings — out of bed and into the bathroom, pee, drink water, back to bed. Sometimes she didn’t go back to bed and I’d find her lying three-quarters asleep on the day bed.

I said: “You shouldn’t drink the tap water. It’s salty. Salty water will only make you more thirsty. I’ll leave a tumbler of sweet water by your bed. Drink that.”

“But I’ll wet the bed.”

“Stop worrying about wetting the bed. It’s a hot country. The mattress will dry.”

Now Maud was trapped in a |vicious circle. She was up all night, drinking water; she was exhausted during the day. She was cranky and uncharacteristically brutal to her brother and sisters. She began to cry at the slightest provocation. After her riding lesson, she was too tired to speak. She sat out during netball because she was too tired to play.

And she was freezing cold — quite blue with the cold. She wore a fleece all day in class, when everyone else was barefoot in a T-shirt.

Sometimes it crossed my mind that she must be sick. Once I even thought, “Diabetics drink a lot of water.” I’d learnt it in First Aid when I was an air stewardess. The thought flitted out of my brain as quickly as it flitted in. We have no family history of diabetes, except both my grandfathers and they were over 80 when they were diagnosed.

One Tuesday night she came into my bedroom, woke me up and announced: “I think my throat is closing over.” Finally, a symptom I understood! Something I could take to the doctor!

The following morning I told her teacher: “Maud has a sore throat. If you don’t mind, I’m going to take her to the GP in the Specialist Hospital. I’m told you don’t need an appointment; we’ll be back before break-time.”

The doctor had all the time in the world for us. He examined Maud’s throat and listened quietly while I ran through the list of her secondary ailments. I felt a bit foolish, for they sounded very inconsequential: she drank too much water, she’d wet the bed, she was cold all the time, she’d lost weight . . .

“How much weight?”I happened to know what she’d weighed in September, when we left Ireland for the Middle East, because we’d all weighed ourselves for a laugh, on the scales we used to weigh our suitcases. She’d dropped five kilos.

I said: “And in the strangest places, Doctor; her shoulders, for example.”

“Is she breathless?”

I said: “Now you come to mention it, this past couple of days, running up the stairs, she’s been breathless . . .” (I didn’t know then what I know now, that when your child is breathless, be afraid.)

“Does she have pain in her stomach?”

I opened my mouth to say “Doctor, we’ve come here with a sore throat, and you’ve a waiting room full of patients and they’re going to lynch me if we take up anymore of your time . . .” when Maud spoke.

“My tummy is really hurting,” she said.

Everything that happened next is a bit of a blur. I know the nice doctor calmly tested Maud’s blood sugar with a little prick on her finger, which drew blood, and a machine which gave an instantaneous result. He pronounced her blood sugar six times higher than normal.

She was sent to the toilet to pee into a plastic cup and her urine was whisked away to the lab “to check for ketoacidosis”. The GP seemed to assume I knew what ketoacidosis was. I know now, of course, that it’s what diabetic children suffer from, just before they go ‘pop’. She was made lie down on a bed in the emergency room, in her school uniform, and hooked up to a drip. I texted my mother and Nick.

“Maud’s on a drip. Diabetes?”

When the results came back they told me that Maud had Type 1 diabetes — juvenile onset diabetes. Her pancreas was broken and unable to produce the hormone insulin. So the sugar was building up in her blood — all dressed up with nowhere to go.

When this happens the kidneys begin to work overtime, dragging the sugar out of the blood and expelling it from the body in the urine. To do this they need a whole pile of extra water, to make all the extra urine. That’s why Maud’s brain was telling her to drink lots and lots of water.

And the dramatic weight loss? That was her liver breaking down fat reserves (in her shoulders) to give her some energy, except it’s not terribly |efficient, just an emergency measure, for dangerous things called ketones are also produced which cause a pain in the tummy.

The doctor told me I was smart (or lucky) to get her to the hospital. Some children are in a diabetic coma before they are diagnosed. Or dead.

They told me she was going to have to stay in the hospital for a few days until they got her blood sugar stabilised. They did not want it to drop too quickly. I asked them if it would be possible for me to pop home and get myself a pair of socks and a sweater. And Maud’s nicest nightdress. And her teddy bear.

At home I quickly phoned my mother, to explain the earlier text.

She said: “Don’t blame yourself!

You’ve never given that child a sweet or a fizzy drink since she was born. And all that breastfeeding until you were a bag of bones ... And you’ve cooked for her every day for eight years. I remember you standing making stock from scratch when she was a baby. It’s not your fault Maud has diabetes.”

Until this point I had not thought to apportion blame. Now doubt clouded my mind. Could I possibly have done something wrong, somewhere along the past eight years, to cause Maud’s diabetes?

Back at the hospital, I was taken to Admissions to sign forms and discuss medical insurance. He was very solemn, the man in Admissions. He told me: “Your daughter is being admitted to intensive care.”

They don’t allow you to wear your nicest nightie in intensive care because they have to stick things onto your chest and attach them to a pile of monitors. And of course there’s the horribly painful needle for the drip, stuck into the back of your hand.

I had one of those inserted when I was delivering Maud.

That night Nick stayed at the hospital with her, and I went home to write my novel. But the words wouldn’t unravel in my brain. I couldn’t get what I was thinking down on paper. It was very frustrating; a numb feeling. I assume that’s what writer’s block feels like.

Maud is never going to recover from her Type 1 juvenile onset diabetes. It’s something she was born with, and something she’ll carry with her all her life. It is a life sentence, but, fortunately, not a death sentence.

Twice a day she has an injection of insulin to compensate for her pancreas not producing any. Nick and I give the injections; we learned by injecting into an orange. When she’s a bit older, she will inject herself.

She checks her blood sugar level every couple of hours by pricking the end of her finger, and feeding the glob of blood into her blood glucose monitor. If the reading is high, she goes outside for a run around, or she skips; if it’s low, she drinks orange juice.

Our bodies are very sophisticated computers. It’s impossible to cheat the blood glucose reading. One stolen sweetie at the wrong time of day, and the reading shoots way up. Tell tale! Tell tale!

We have to wake her up between 11pm and midnight to make her eat, in case her blood sugar drops during the night and she goes into a coma, and we don’t realise.

Apart from the realisation, very little has changed. I was always anal about what the children ate, and regimented about feeding times.

Everyone eats the same breakfast, except Maud doesn’t get butter on her toast, and I make her an egg-white omelette while the others eat boiled eggs.

We’ve discovered delicious tuna fish salads in McDonalds, freshly made, and the McSalad comes with a Diet Coke (she’s allowed diet drinks because they don’t have any sugar).

She’s an amazing child, the way she calmly accepts her condition.

She says: “Everyone has their own problems. Isn’t my cousin Kathryn allergic to horses?”

This extract is from Over The Moon, Poolbeg Press, £12.99, with all proceeds going to Our Lady’s Children’s Hospital, Dublin. Anne Dunlop, originally from Magherafelt, is the author of six novels

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