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Nami Clarke.

 

 

 

By NAMI CLARKE

This time last year I was waiting.

My daughter was to be delivered in three weeks time.

We decided on the 28th of June as the day she’d been induced because it was the longest amount of time advisable to extend the pregnancy.

We specifically didn’t want the 21st of June because that is only one day after my father-in-law’s birthday.

We didn’t want to spend every year hereafter wishing my partner Andy’s dad a happy birthday, with the anniversary of our daughter’s likely death overshadowing it.

Not that one week’s grace would have made a difference to the pain that was coming. Life as we knew it had already changed in the tiny window of time between one ultrasound and the next.

Much like my pregnancy with our first child, I’d been experiencing a completely ‘normal’ pregnancy with our daughter.  So when I was informed it would be best if the head pediatrician and obstetrician interpreted my ultrasound results I was concerned but not panicked.

My husband decided to accompany me to the appointment at the last minute and we sat bored and impatient in the waiting room.  We were completely and utterly unprepared for the sledgehammer that was about to hit us straight in the face.

Finally, they called my name.

Our toddler, already having eaten his way through every morsel of his lunch box, jumped up enthusiastically and marched in ahead of us.  We smiled and nodded and entered the room, making the usual polite introductions.

But there weren’t just two people in the room as expected – there were three; pediatrician, obstetrician and a geneticist.  “Our” geneticist.

And there was nothing in the room but two sofas, in calm, non-offensive colours, a box of tissues, a few toys to keep happy and healthy children occupied and a very pretty view.  With the final introduction and the word “geneticist” swirling around in my head – my heart stopped.

Clinical terms were bandied about and watered down for our benefit. “Rare disease”, “cystic kidneys”, “irreversible”, “lung failure”.  They drew diagrams and passed me the box of tissues.  “We’re very sorry” they said.

I watched my toddler – robust and healthy and thankfully oblivious – as he tore the room apart.  I truly did not believe a word they were saying.  I felt myself getting hotter, dizzy.  I looked at my husband and grabbed tightly onto his hand.  He was not crying.

The specialists gave verdict was reiterated again: Autosomal Recessive Polycystic Kidney Disease.

From that moment, we waited.  That was all we could do.

I stopped work immediately and somehow the rest of the world carried on happily.  I tried not to question why.  I tried not to Google for more information.  I tried to eat, rest, and not lose my mind completely.

I tried, reluctantly, to touch my bulging stomach with my poor, poor baby still inside. This beautiful baby who we were about to receive and about to lose all in the same breath.

I managed a few hours sleep each night invariably waking around 3am and waiting for the painfully slow approach of dawn.  And then the day finally arrived.  The 28th of June.

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“Autosomal Recessive Polycystic Kidney Disease.”

We didn’t pack champagne for the hospital like we did for the birth of our son.  We packed lots of sparkly new baby clothes, carefully selected and perfectly pressed and folded.

For the first time in my life I’d shopped without a mere glance at a price tag.  I didn’t care what any of cost.  If she was to be with us for 5 hours, 5 days, 5 weeks or 5 months at the absolute most – then I wanted her to have the absolute best of everything.

I’d had one particularly special dress made and I asked the dressmaker to save me all of the offcuts of fabric.

I wanted to salvage everything I could that would keep me connected with her, and her with us.

“Create a special box” they’d suggested.  “You might like to write some letters, include some photographs, any special things that you’d like her to keep”.

We clung to any shred of positivity that was flung our way.  We held hands and reassured each other we were all doing so, so well, all in the safe confines of endless specialists appointments, the gentle hushed conversations with pastoral carers, family counsellors and the psychs with their prescription pads on hand… just in case.

My daughter, Dulcie entered the world gently and quietly, with her little fists clenched and her dark, dark eyes glancing hurriedly around the room.  I held her tiny little body on my chest, blotched and heaving from the demanding last minutes of labour.  Oxygen tubes were quickly fitted to her tiny face and I was reassured that she was doing “really, really well”.

From here, we simply watched,  waited and held her tight.

The hours between consultations began stretching into days.  Dulcie was off oxygen and proving to be quite the feisty miss, with a blood curdling cry that tore through the gentle, rhythmic beeps of the neonatal intensive care unit. “Go Dulcie-moo!” we cheered, egging her on.  “Tear the bloody place down!” my heart would cry.  “Prove them wrong. Do it! I know you can.  You are my daughter.  I believe in you.”

We were allowed to take Dulcie home when she was two weeks old.  This was a milestone I wasn’t sure we’d reach.  I was finally one of those mothers in the lift – the ones I hadn’t been able to look in the eye for the last month – with a brand new babe, strapped tightly in the blue car seat capsule, wrapped so in layer after layer that only ten little fingers were visible.

We fronted up to every appointment month after month, ready to face the music.  Blood pressure checks, blood gases tests, ultrasounds, x-rays and the usual weight, length, height checks for a newborn.  Sitting in the waiting room at the Royal Children’s put things into perspective.  We were lucky, we still had our child, and from all appearances she was bright and happy and healthy.

Indeed, the specialists were amazed.  “She’s defying the odds”, they remarked.  They began to suggest dialysis may not be necessary until she was 5, then 10, then 15.  One day the renal specialist made a reference to when Dulcie would be 25 years old.  And we walked out of there feeling like we’d won the lottery.

By now Dulcie was ten months old.  She was in the 95th percentile for her weight, had no issues passing urine and was clearly thriving.  We were due for another ‘big’ appointment where her kidneys would be checked for cysts and her liver, for any consequential damage.  The days leading up to these appointments saw me becoming increasingly edgy, ready for that sledgehammer again.  I was preparing to brace myself for that monumental smash in the face.

This time, very, very different words were being thrown about the consulting clinic: “Fabulous”. “Clear”.  “No cysts”.  “Normal”.

“Normal”.

And then… “Misdiagnosis.”

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Nami and Dulcie.

On the inside I was singing but I could barely utter a word.

She’d done it.  She’d proven them wrong.

The team of experts and their machines and their modern technology and their majority consensus that our baby girl would not survive because of rare, genetic kidney disease were wrong.

My mind raced back the moment we’d made the decision to continue with the pregnancy past 33 weeks, despite the gentle reassurance that we’d supported should our wish be otherwise.  The house full of flowers, the call to the funeral company, the grieving, the induced labour, it was all wrong.

I’d never questioned why our daughter ‘had’ a fatal kidney disease.  However the weeks that followed our ‘get out of jail free’ appointment I did question why we had to endure such a long and harrowing journey only to end right where we began.

I may never know the answers to many of my “whys?” but I have learned a lot, regardless.  I’ve learned to count my blessings and to embrace blessings from others.  I am not a religious person, but I truly believe that the prayers, well-wishes, positive energy and love that was sent out into the universe from all across the globe for our little girl has returned to us in spades.

And I have learned that you can spend a lifetime caught up questioning and blaming and wondering but the only person that will lose out on enjoying the precious here and now, is you.

I lost the joy of my second pregnancy, labour and the magical first days of mothering a newborn to grief, heartache and fear.  I am determined to not lose out a second time.  Instead, I’ll forgive the universe, accept my blessings and move forward.

And the fabulous thing is that I’ll be doing it with my daughter right beside me, having a riot of a time as we tear the whole bloody place down.

Nami is the owner of an award-winning portraiture studio, a graduate, and a 2006 Telstra Business Woman of the Year nominee. You can find her blog here.

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