From heartbreak to hope: watching my premature baby girl fight for survival

This is what it feels like to sit by the bedside of your 26-weeker as you watch them fight for their life.
This is what it feels like to sit by the bedside of your 26-weeker as you watch them fight for their life.  Photo: Supplied

So here you are. Teetering on the edge of an abyss, your synapses firing in overdrive, your heart squeezed between the strong fingers of fear. Profound, core-shaking, unending fear.

This is what it feels like to sit by the bedside of your 26-weeker as you watch them fight for their life. Near enough, anyway. It's a profound kind of insecurity that shakes your belief in all and everything.

Because one day you can be happily plodding through life – enjoying the light flutters of the second trimester, your bump just beginning to pop, not yet waddling or heaving or grunting – and the next moment, you can be waking up in a puddle of your own blood, or your waters are breaking, or a doctor's arm is inside you urgently, painfully trying to grasp on to two tiny feet to pull a baby out of you in time to save its life. A baby that weighs just 698 grams. A baby whose lungs have barely begun to sprout alveoli; tiny trees being asked to breathe through their branches instead of their leaves.

Chloe Adams with her daughter Frankie.
Chloe Adams with her daughter Frankie.  

If this can happen, anything can. Right?

But looking on the bright side, she's a warrior, your baby. And she's in a good hospital. The best hospital, really. And perhaps the cardiac surgery, or the six blood transfusions, or the three weeks on life support, perhaps that's where the suffering ends. But in your darkest moments, you wonder if there is more. Is this just a pause in proceedings, an opportunity to breathe before the next terror arrives?

And it gets to the point that every time your baby is poked or prodded by a health professional, another cannula into her tiny stick of an arm, or a suctioning of the fluid that is threatening to drown her from the inside, or the injections into the eyeballs without sedation, you start to feel each touch, each shudder of pain, in your own body. A searing sensation as you sit there watching on like a stranger, or a punch to your solar plexus, or a skewering of your insides.

And someone somewhere comments, "hasn't your figure bounced back nicely?" and you want to be sick.

And all you can see when you move like a shadow through the hospital foyer is the babies not yet born, still safely cocooned inside their mother's bellies. And the only way you can sleep at night is with a heat-pack by your tummy, a pseudo child to embrace. And you make deals with God even if you're not sure you believe in Her. And your mind starts to play tricks on you. If you kiss a photo of your baby each night, and you never once forget, everything will be OK, right? And what about those cracks in the pavement, luring you into a game of life or death?

And the doctors say "ask questions", but the only question you want answered is the very one they can't be sure of; and besides, you don't have nearly enough courage to utter the words anyway.


"Will she live?"

And just when you think you can't go on, your three-year-old looks up at you and says, "How's the little one, Mummy?" and his arms around your neck are a salve for all the days you can't hold your baby girl.

And then one day, surprisingly, fear gives way to hope, and the hope breeds more hope, and you know it's probably just delusion, but who cares. If you're lucky enough to be visited by hope, you cling on for dear life and try not to let go.

Frankie at 10 weeks corrected.
Frankie at 10 weeks corrected.  Photo: Supplied

And then, all of a sudden and also very slowly, one day your baby turns a corner and your baby is going to be OK. And you're left standing away from the edge, blinking into that dark, inky ravine below you, safe in the knowledge that for now, the fear has passed.

But somewhere in the depths of you, you remember.

And then a new thought forms, and you know that your baby breathes and cries and smiles because you live in a country where someone, or perhaps everyone collectively, decided it was OK to spend several hundred thousand dollars to keep tiny babies alive. And that fact makes you feel humbled and dumbfounded and guilty and grateful. That what it costs to keep your baby alive is more money than some people could even dream of earning in a lifetime.

And then there's the thought of all the other mothers and fathers in other places who lose their perfect precious beings at full term because they don't have access to a clean scalpel and a trained hand. And where's the justice in that? Yours is just one family among millions. What did you do to deserve this kindness?

And then you look at your baby, her skin no longer translucent or sticky like jelly, her cheeks fattened and her knees pudgy, and you try not to think about everything that came before. Try not to think about the mother in the next room weeping and wailing. Just think about now. And the quiet stillness of machines not alarming, not sounding their constant warning of imminent death and loss.

And you try instead to focus on the magnificent, terrifying, miraculous sound of your baby's breath.

Chloe's daughter Frances was born in the Royal Women's Hospital in October 2016. She spent 135 days in the hospital's neonatal intensive care unit and is now home with her family.