‘We’re not having another baby,’ I swore to my husband Kenan.
We had two beautiful kids – my stepson Kayden, five, and our newborn, Camila.
Then, when Camila turned five, Kenan and I felt the itch again.
‘Just one more,’ we decided.
Falling pregnant, we didn’t find out the sex – a happy, healthy bub was all that mattered.
At 34 weeks, I went for a routine scan. But as the doctor slid the wand over my bump, he looked worried.
‘The baby has a mass on its neck,’ he said afterwards. ‘I’ve booked you an appointment at the specialist – they’re expecting you now.’
It’s serious, I realised.
Kenan rushed home from work and we went together. An ultrasound picked up a 7cm growth.
Could it be cancer? I panicked.
I was booked in for a caesarean three days later. Before the delivery, to try and reduce the mass, doctors pushed a big syringe into my tummy, but my energetic bub was moving so much, they had to stop.
Kenan held my hand as our child came into the world with a healthy cry.
‘Is it a boy or a girl?’ I gasped, as our newborn was whisked away and intubated to help with breathing.
‘A girl!’ the midwife smiled.
A few hours later, my hospital bed was wheeled to the NICU.
Cradling my sweet daughter, who we decided to call Amelia, I could see the mass was a lot bigger than I’d imagined.
That’s not 7cm – it’s more like 20cm! I thought.
It started under her neck and went up to her nose.
This is really bad, I fretted.
Still, I was overcome with love. With her sparkly eyes – which were just like mine – Amelia was gorgeous.
But I couldn’t breastfeed, so I expressed milk, which she was fed through a tube.
The next day, we prepared Kayden and Camila to meet their sibling.
‘Her face is a bit bigger than everybody else’s – but she’s just your sister,’ I said.
We needn’t have worried – they were besotted!
A day later, Amelia was diagnosed with lymphatic malformation. It meant her lymphatic system, which helps rid the body of toxins, waste and other unwanted materials, hadn’t formed properly. As a result, thousands of cysts had formed under Amelia’s skin.
At least it’s not cancer, I thought, relieved.
Going into mummy mode, I peppered the specialists with questions. But it was the first case the hospital had seen in 12 years, so they were unsure how to treat Amelia.
At just four days old, she had sclerotherapy, where docs injected different drugs straight into the cysts to make them shrink.
But poor Amelia’s face was still swollen like a basketball.
Is it even working? I panicked.
Terrifyingly, the cysts blocked Amelia’s airways and after having to be resuscitated several times, she could no longer be intubated. So, she was fitted with a tracheostomy tube to help her breathe.
Speaking with a doctor who specialised in lymphatic malformations in the United States, Kenan and I considered moving there.
It was going to cost a bomb, but it was worth it to give Amelia the best chance.
Then at three months, she was transferred to The Children’s Hospital at Westmead in Sydney, to be treated by specialist Dr David Lord. Amazingly, he’d trained in the US with the doctor we’d spoken to.
Still using sclerotherapy, he blasted Amelia’s cysts with multiple medicines at the same time.
Our girl’s face was still swollen though.
Have we made the right decision? I thought.
But Dr Lord reassured us it would take time to get results. After 123 days in hospital, we finally got to take Amelia home, hooked up to multiple machines.
Still, our girl was always smiling. But we were concerned about her future.
‘Kids tease,’ I fretted.
As Amelia had a weak immune system, we didn’t leave the house much, so we’d escaped stares.
I didn’t even see Amelia’s mass anymore. To me, she was a beautiful, happy baby.
At 18 months, after 17 surgeries, the swelling started to subside.
Now five, our gorgeous girl has started prep.
‘I’m a big girl,’ she grins.
And despite a little facial scarring from her 30 surgeries so far, she looks just like any other kid – aside from her trachy, which she still needs for now.
‘That’s disgusting!’ some kids have said when I’ve had to suction it of snot and mucus.
‘You know how you get boogers up your nose? It’s the same,’ I explain.
Amelia has come so far – while she’s still primarily tube fed, recently she ate her first chicken nugget!
She still has sclerotherapy, and when she’s run-down her face will bloat.
But our Amelia is sassy as anything.
‘No you didn’t!’ she’ll exclaim, clicking her fingers and shaking her head.
Our sweet girl has spunk – she’s more than just a pretty face.
For more, see Vascular and Lymphatic Malformations Awareness Group
