Decision Making

It was a shock to receive the news of Kat's condition. Afterwards, all family members dispersed. I know myself that I just wanted time and space to process it all. They'd been given an honest view of what they could expect - best and worst-case scenarios. At best, Kataraina could respond to the medication, swallow, breathe unassisted, wake up, move and possibly learn to walk at some stage or maybe learn a couple of words. At worst, she would never walk, never talk and, either way, she faced a lifetime of medication and possibly seizures.

Because it had already been almost two weeks since she was born, her elevated glycine levels may already have caused quite significant brain damage, and the fact that she was almost asleep from birth meant she could possibly have an extreme form of the condition.

So the decision was whether to medicate, knowing that it may or may not work, that she may face a life of debilitation and would need 24/7 care OR choose not to start the medication, take the machines away and she would most likely die. They had also found, by this time, that she had a collapsed lung from pneumonia and a broken collarbone, which happened during labour. Either way, if the decision was to medicate, it had to begin as soon as possible.

And so it was left to the parents - should their baby be kept alive or allowed to die?

SCBU's biggest baby

Kataraina continued her stay in SCBU, and it was strange. She was a giant among all the other babies, who were in intensive care for being born prematurely, and they reallly were tiny wee things. The hardest part was that she looked like nothing was wrong - she wasn't coughing, feverish, choking, crying. She had no physical deformities, and yet there she was, being tube-fed her milk, while we all waited for a doctor to shine some light on her condition.
And on she slept.

It was by Thursday the following week that specialists decided to get a sample of her CSF (cerebro-spinal fluid) to see if it was a particular condition.

On Friday the meeting was held. There must have been around 20 family members, the paediatrician from SCBU, a neurologist and a person she would be in contact with for the rest of her life - metabolic specialist Dr Callum Wilson.

It was that day that he informed the family of Kataraina's condition - Non-Ketotic Hyperglycinaemia (NKH), a genetically inherited metabolic disorder that causes raised glycine levels, which can cause coma-like states, brain damage and seizures. He added that it was incurable, though medication could be started to bring her glycine levels down and hopefully she would wake up, breathe on her own and be able to move.

It was bittersweet - to finally know what was wrong, but that it would affect her forever.

Code Red

Late on Thursday night I got a phone call around midnight, saying that Kataraina had stopped breathing and been rushed to Middlemore Hospital in South Auckland. I bawled on the phone, thinking this meant that we'd lost her, but I calmed myself down, grabbed my younger brother and drove to the Emergency ward.

She was laying on a bed meant for adults, so it made her look even smaller. She had oxygen being administered via CPAP, a pulse monitor, and a breathing rate/heart monitor, which was fluctuating between almost normal and extremely low.

Her parents were one either side of the bed, visibly shaken and upset, holding the hands of their new baby, probably hoping and praying that she would be alright.

In the early hours of Friday morning, she was moved from Emergency to the Neonatal Care Unit and into intensive care or SCBU (pronounced: skibboo). She was in the incubator for one or two days before being moved into a bassinet, where she lay hooked up to all manner of machines with no blankets, but what I call a "toaster" above the bed to keep her warm.

She could not wake, did not respond to heel-prick tests, could not breathe on her own or swallow, and she would often suffer from body-shaking hiccups.

They did not know why she wasn't waking and had to do many tests as a process of elimination. She ended up being put on antibiotics as a first response while they continued searching for answers.

Sleepytime

By the Thursday of the week she was born, Kataraina still hadn't woken up. She had sighed appreciatively upon having her first bath, but she had not opened her eyes to see the many family members visiting her with open arms, nor had she cried for a feed. At this point, she was so sleepy that even the nurses at the private birth-care facility found it difficult to get her to take a bottle.

She was still cute, though, and we were all still visiting all day, every day, each hoping we might be the one holding her when she finally wakes up to meet us!

An Introduction to the world

On August 16 2005, little Kataraina entered into this world - rather quietly and sleepily but with her eyes open wide.

She weighed in at 8lbs 3oz and was the first bouncing bundle of babyness for anyone in our generation!

It was an exciting and emotional day. Unfortunately I had to work that afternoon, so I ended up missing the critical moment of entry, but I heard sound clips of her mother (my first-cousin) screaming in agony, which made me (A) feel like I was there, (B) ponder the many uses of the everyday technology that is cellphones and (C) put off breeding for a bit longer!

I got to see Kataraina for the first time late that night, after I finished work - around 9.30pm. She was sleeping, but her mum told me that I could hold her because she was rather exhausted (the baby that is) from the birth and sleeping off the effects of the epidural during labour.

She was so tiny! So rarely do I see a newborn that I forget how small and fragile they are. This photo was taken that day.