Naomi Cook, 35, Bondi, NSW
My daughter looked at me with pleading eyes. ‘Mummy, I’m hungry,’ she whispered. She’d only finished her Sunday lunch 15 minutes earlier. But little Hana, six, already wanted a snack. ‘You just have to wait,’ I explained. My girl began to cry and I felt my heart break.
In the last 12 months, Hana’s weight has ballooned from 21 kilos to a morbidly obese 50 kilos. That was despite her following a strict diet of healthy foods. It wasn’t always this way. Two years ago she was a regular little girl who enjoyed playing with her sister Maryam, four, and her friends.
Then, just before Christmas 2013, my partner Noor, 35, and I were concerned when Hana became exceedingly tired. A GP checked her over and found nothing wrong. But when Noor and I discussed it later, we realised a number of things about Hana didn’t seem right.
My girl began to cry and I felt my heart break.
As well as her increasing tiredness, our girl was constantly thirsty. Her growth had slowed and she was shorter than her friends. She was chubbier too, even though she ate so healthily – brussels sprouts were her favourite food. We also noticed her hair seemed to have stopped growing.
Suddenly it hit us. Could she have an underactive thyroid? Noor’s an orthodontist and I’m a nurse so we know a little about medical matters. We booked an appointment with an endocrinologist, a specialist in hormone imbalances.
However as it was Christmas, we had to wait until January, and over the next two weeks Hana’s condition deteriorated. Two days before the appointment, she complained of an excruciating headache. A blood test at the hospital confirmed she had an underactive thyroid, but a CT scan revealed something more sinister. ‘We’ve found a large mass on Hana’s pituitary gland,’ the doctor said. ‘It’s called a cranio…’
‘…pharyngioma,’ I said, finishing the sentence. Because of the research I’d done, I knew… It’s a type of slow-growing brain tumour and although it was benign, I knew removing it could be difficult. As Hana was scheduled for surgery four days later, I tried not to worry.
Because of the research I’d done, I knew…
‘The doctors need to remove a lump from your brain to make you better,’ I explained to my little girl as we packed for the hospital. But as she was wheeled into the operating theatre, nothing could stop fear gripping my heart. Hana was so brave, but what if something went wrong?
Thankfully, the operation to remove the tumour was a success. But there were complications. During the op, the hypothalamus, the part of her brain that controls appetite and hunger, was damaged. After 10 days in the ICU, we took Hana home. As she recovered from the surgery, its impact was obvious. Suddenly Hana became ravenous. All she could think about was food and even after she’d eaten, she would ask for more.
Doctors warned us she’d have a tendency to gain weight as she’s not releasing the right hormones to feel full. Instead, her rest and digest hormones are overstimulated, so insulin is constantly being pumped through her body, making her feel famished.
There’s no cure so we manage it as best we can. We’ve limited her diet to three meals a day, plus two healthy snacks. But in spite of this Hana is obsessed with food. She can’t concentrate at school and no longer enjoys playing with her sister, or her friends. Even when she knows her stomach is full, it doesn’t register in her brain. On bad days she will just ask me when her next snack is every five minutes.
Despite our efforts to control her diet, Hana has gained about a kilogram every fortnight since the operation 12 months ago. She has also grown 10cm, because of the growth hormone replacement she’s taking, so she complains of growing pains in her legs as well as aching joints from carrying her weight around.
Hana has gained about a kilogram every fortnight.
When standing, she shifts from foot to foot like I used to when I was pregnant, or she hobbles around like an old lady. It was so sad when Noor and I realised she needed a wheelchair to help her get around. At first she was just using it for long walks. Now she has it every day at school.
We’re desperate to find a way to save our girl. Hana is morbidly obese, with a body mass index of 34, when it should be 19. She has developed weight-related complications like sleep apnoea, a dangerous condition that stops her breathing during sleep.
This is in addition to other complications such as diabetes insipidus, that requires medication so she can retain vital fluids, and an inability to produce the stress hormone cortisol. This could cause adrenal shock if she is not given an emergency injection when something startles her.
We’re desperate to find a way to save our girl.
We’ve heard of surgery helping children with her kind of obesity but the cases are so rare we don’t know if it will be possible. There are also medications that have been trialled internationally, but I don’t know if that will be possible for Hana either.
If we don’t find a cure, obesity will gradually threaten Hana’s life. We’re desperate, which is why we’re speaking out. If there is anything we can do, we will try it. Because saving our girl means the world.
Originally published in that’s life! Issue 6, 2015.
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