Flame of hope

by Larissa Patton

 

We were parents at last – but parents of a tiny creature whisked away at birth, put in a plastic box and given a fifty per cent chance of survival.

With my arm through the porthole, I rested the tip of my little finger in her palm and hoped like hell she would wrap her hand around it.

“I’m certain that life presents no more demanding challenges than having a baby in a Neonatal Intensive Care Unit at 24 weeks gestation,” said the Head of Neonatology, across the top of the humidicrib.

Two months before, Anthony and I stepped off a plane in far north Queensland for our last holiday as a couple before the baby arrived. I was glad of the opportunity to straighten my back and pressed firmly on my belly to ease a sharp pain.

The next day at the Ayr Hospital, a doctor tied the straps of a plastic apron behind his back and announced that there was no way to stop the labour. I looked at him in his shorts and sandals. He appeared no more ready for the arrival of this baby than I was.

An empty humidicrib loomed beside me during the ride to Townsville. I closed my eyes, determined not to deliver a baby in the back of an ambulance while Anthony followed in a hire car.

When I saw him again inside the Townsville Hospital, his eyes were red.

At the hospital, the baby arrived with shiny, translucent skin.

“I have some concerns about your daughter,” a doctor told us in his office.

The frail little creature, sprawled in the humidicrib with eyes fused shut like a baby sparrow fallen out of its nest, was our daughter.

She weighed 634g. We named her Elsie.

This was parenthood. Wasn’t there supposed to be some overwhelming feeling of love that no one can explain or prepare for?

There are question marks (a) over her survival, and (b) over any disability she may have. But while there is uncertainty, there is hope. And the flame of hope is still flickering.

In the first few days, we were afraid to love Elsie. She was too small and frail. There were too many tubes and wires and monitors going in and out and off her fragile body. If we didn’t love her, it wouldn’t hurt as much to lose her.
It had been hard to know whether to celebrate or mourn the birth of our daughter. I had known nothing about premature babies and was able to tell how much our friends knew by their text messages. Those without children wrote, ‘Great news, congratulations! Love the name.’

Those with children wrote, ‘Thinking of you both, and praying for Elsie. Please let us know if we can do anything to help.’

The medical team was doing all they could and Elsie all she could. Nothing else would determine whether she lived or died.

As for us, I produced and froze breast milk that we hoped one day she could drink, we sat beside her and we looked after each other. At times, none of that felt like enough.

Over the next few weeks, I imprinted in my mind her hairline and how her hands looked like a doll’s. If we did lose her, I wanted some memories from the short time she was ours.

I felt her arm twitch under my hand. The drugs that had paralysed her to allow another lumbar puncture were wearing off. Again they had folded her little body in half, inserted a needle into her spine, and withdrawn some spinal fluid to test for infection.

It was not long before the instinctive love for our beautiful little girl was unquestionable and the flickering flame of hope became a bonfire. A fifty per cent chance of survival. We had lost a pregnancy in the past because of a defect discovered at the 18-week scan. If we could be the one in 750 back then, the one in two chance of survival offered for Elsie, by comparison, was enormous.

Of the 24-weekers that survive, half will have some sort of disability, from blindness to cerebral palsy. The odds were good – half will not. 

We had learned from our earlier losses that whatever happened to us along the way would be part of our journey to start a family. We would support each other with our experiences and grow closer with shared hopes and heartbreaks.

“There’s no room left to move on the ventilator,” said the Head of Neonatogogy as he walked out. “If the steroids are going to work, we should see some improvement by tonight.”

If they didn’t, doctors would turn off the machine that breathed for her. Our poor little baby girl. How long would it take for her to die and would we be able to hold her at the time?

“Let’s not worry about that unless it happens,” said Anthony.

I nodded. That was true. They had not turned the machine off, so there was no point crying about it.

We peered back into the humidicrib and drew instant and further inspiration from Elsie’s amazing strength and eagerness to begin life as soon as possible.

And then I felt the grip of her tiny hand around my little finger. If Elsie was going to be strong, who were we not to be the same?

 

The grip of Elsie's tiny hand around my little finger

 

© Larissa Patton

“A gender-equal society would be one where the word ‘gender’ does not exist: where everyone can be themselves.”*

I’ve always been aware of gender conditioning and actively tried to combat any lingering prejudices or stereotypes in my own parenting, even down to encouraging dolls with my boys when they were little. It’s great to read people writing about gender issues they’re experiencing with their kids. For too long these subjects have been discouraged or silenced. I’d love to publish some more creative writing on this topic, especially if you are struggling with a child who actively tries to move away from gender normative preferences. A society where everyone can be themselves thanks Gloria for those aspirational words.

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* Gloria Steinem