A loss no family should have to suffer
When Carly Hadman’s two-year-old daughter, Effie, started having seizures, Carly had no idea of the journey of pain that lay ahead…
Even before she arrived into this world, Effie was our little miracle. My husband, Paul, and I had been together for 10 years and married for three before she came along. We’d wondered if we’d ever be parents. So, when I gave birth in June 2010, we felt truly blessed.
I know every parent thinks this, but she really was the perfect little girl. She loved socialising with other little ones. While the rest fought over toys, Effie would give hers up to stop them sobbing.
As she grew, we dreaded the terrible twos, but they didn’t arrive. Instead, she loved books, learning her numbers, colours and animals early. She adored Disney and her favourite song, hilariously, was Gangnam Style.
In 2013, she was almost three when I heard Paul give a shout while he was bathing her. As I rushed in, Effie suddenly pitched forward, unconscious. Paul caught her before she hit the water.
It was over in a flash, but the next morning it happened again, three times. My GP advised that she was having seizures and, after blood tests and an MRI scan, a neurologist diagnosed childhood epilepsy and prescribed medication.
It took a while to get her meds right, and she’d still have seizures occasionally. ‘Oh, dear,’ she’d say cheerfully, picking herself up after minor ones. But the more serious episodes wiped her out.
Then other things started happening. ‘Effie needs to practise her numbers,’ her pre-school teacher commented. She’d been able to count up to 20 for months, but now she couldn’t remember.’
Now I’d noticed it, she’d forgotten other things, too.
The day before her third birthday, we heard Effie get up. As usual, we jumped back into our bed so that she could ‘wake us up’. But instead we heard a thump.
We found Effie lying on the floor. And when we put her on her feet, she was as wobbly as a newborn. ‘My party,’ she sobbed. ‘I have to walk.’
Rather than her racing around the soft play centre we’d hired, Paul and I took turns carrying her, exchanging worried looks.
Doctors suggested we increase Effie’s epilepsy medication, but that was only a temporary fix. She was still struggling to stand.
‘ We’ll test for Batten disease,’ the doctor said in November 2013. ‘But don’t
google it – it’s extremely rare, so it’s unlikely to be that.’
Of course we googled it. ‘No!’ I wanted to scream. Because children with Batten disease lost their sight and their speech. They can’t sit, or hold their heads up. Their life expectancy was between ages five and 12. No, no, no, that wasn’t us. While we were waiting for Effie’s results, George, our precious son, arrived in December. Effie adored her brother, even though every morning we had to ‘re-introduce’ them, as she kept forgetting who he was.
George was six weeks old when we returned to the hospital for Effie’s results.
‘I’m sorry,’ he said. ‘It is Batten disease. There’s no cure. Just ring a hospice when you’re ready.’
At that moment, my grief began. Paul and I had come in separate cars, as he was intending to go back to his job as a mechanical engineer, but I couldn’t manage to drive Effie home.
‘Can you take her?’ I croaked, unable to look at the little girl I was going to lose.
I’d never felt so alone, so helpless. My bright, beautiful girl, with her infectious smile and kind eyes, was dying.
On the internet, I found the charity Together For Short Lives, for families with terminally ill children. They were amazing. They told me that a hospice wasn’t just somewhere you went to die. They could provide help in many ways – staying over to give parents a respite, music therapists, consultants… Effie was declining every day, so we had to start making memories. Paul took four months off work, and we went to Peppa Pig World, Alton Towers, Disneyland Paris… Our little daredevil may have needed a wheelchair, but she still squealed with excitement on every ride.
But we couldn’t carry on like that. Effie was getting worse. She started screaming, sometimes for as long as 21 hours a day. My mum and dad, who lived on our street, looked after George, while Paul and I took turns trying to comfort Effie.
There were still good moments. Together For Short Lives organised visits from a music therapist, and Effie loved playing with tambourines and listening to Disney songs.
Although George didn’t understand what was wrong, he’d creep into his big sister’s bed every morning and put Peppa Pig on for them to watch together.
We searched for some glimmer of hope. But we couldn’t deny Effie was getting worse. One day, she was playing on the floor and rolled over. When I tried to sit her up again, she couldn’t. Just like that, she’d lost the ability.
Another day, I realised she couldn’t see my hands. That was a particularly cruel blow. The books she’d loved, the films she’d adored – they were all gone for her now.
So many small losses, preparing us for the big one.
Not knowing how long we had left, we treated her fifth birthday like her 18th, holding a huge party with two bouncy castles. By then, Effie was on 52 doses of medicine daily and, unable to swallow, she was tubefed. Her beautiful pink bedroom, with oxygen tanks, looked like a hospital ward.
‘It’s not fair,’ I’d yell on my bad days. ‘She’s doesn’t deserve this.’ But I tried not to cry. Effie was brave, so she needed us to be brave, too.
By six-and-a-half, our little fighter couldn’t fight any more. She couldn’t move her head, her stomach had failed and, in February 2017, she just stopped breathing.
I’d been living with grief for so long that my pain at losing her didn’t feel new. It was like a dull ache that sharpened suddenly.
It seemed so surreal that we were planning our little girl’s funeral but, when we asked for Gangnam Style to be played, the funeral director smiled. ‘That’s a first,’ he commented.
And that was our little Effie. Unique, and how we’ll always remember her.
For more information, visit togetherforshortlives.org.uk
‘I’d never felt so alone, so helpless. My bright, beautiful girl was dying’