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Staring at the night sky: Reaching a diagnosis and saving our daughter

How important is a diagnosis? Jessie Moss is a mother who knows all to well how much a diagnosis can change a life – in fact, it saved her daughter’s.

The day had arrived and we were eager to get on with it. As four adults sat awkwardly around a child size table for sick and healing kids, and our toddler bustled and boomed, our eldest daughter sucked her thumb. She cocked her head to the side, sitting in a rare quietness that told us she was listening intently.

The surgeon explained the procedure again, in plain language that even Mataamua could mostly understand. We asked a few questions, as did she.

“Will the knife be a ‘kid’s knife?” She asked.

“And will it cut softly?”

“Yes of course, it will cut very carefully,” replied the pediatric surgeon.

We all understood there is never any point in frightening an already anxious child.

At 7:30am, during the pre-surgery formalities, the surgeon also told us something new. The removal of Mataamua’s benign tumors was never optional as we had assumed. Inevitably, the surgeon said, they would turn malignant.

The gravity of the situation sank in.

He understood – there was no point in stressing already worried parents. A world expert, he had done this all before.

So at the eleventh hour, we realised that all of our research, reading, persistence and insistence had in fact saved our daughters life.

Left undiagnosed, people with these tumors don’t become grandparents, or even parents. But genetics has only just got to this point, predicting what bodies are likely to do in time.

They were removed with expertise, precision, care. Her recovery was swift and uncomplicated. We left hospital on time, and carried on with our Christmas and summer as planned. After several weeks, Mataamua could swim again, and in several weeks to come, she will ride a horse once more.

***

Mataamua is almost seven and she is missing a bunch of genes.

A section of one of her chromosomes felt out completely during the fertilisation process. It is not inherited and it was entirely unpredictable. The effects on her development are global. In her body, her mind, her growth, and socialisation.

But you need a sharp eye to spot her differences. Some teachers and health professionals can see them, but we’ve even had to explain the complexities of her syndrome to close friends who have known her all her life.  It is an invisible syndrome of sorts and this makes raising and supporting her all the more challenging.

The months preceding her surgery whooshed by in a blur of appointments. These months made up for the years of confusion, the sluggish pace at which we were passed from specialist to specialist, from wait-list to wait-list.

No one ever seemed to know what was going on.

Guesses and suggestions were thrown around month upon month. Even in my mind, what she ‘had’ would change as often as the direction of wind in this blustery town. One thing however remained constant. Well meaning people assuring us that it didn’t matter what she ‘had’ but how we dealt with it.

I agreed and I understood the intent.

We are to love our children unconditionally and we must meet their needs no matter who or what they are. However, how are we to know what a child’s needs are when we don’t know the finer details, or how they many change as they grow? When a child seems more and more out of step with their peers with each passing year?

***

A small birth weight and slowness to latch weren’t unusual and were swiftly attended to when our baby was born. Digestive issues with solids are not unheard of. Slight delays in crawling, walking, and talking were all still on the charts – if not at the bottom end. Plenty of toddlers get obsessed with narrow fields of play. Lots of young children are overly friendly, and many more still have huge, regular tantrums. Some kids take a really long time to become adept at riding a scooter or climbing up ladders.

All these things and more concerned us. For any child, their universe expands as they grow. More and more lights are switched on and many connections are made. For Mataamua, it was as if a grey fog was growing at the same rate as her universe, which was either swallowing her stars, or obscuring them from our view.

We second guessed ourselves and friends and doctors reassured us.

But the older she got the more the grey expanse grew.

Younger friends met milestones before she did.

This all sounds horribly negative and bleak. It’s not. Mataamua is a beautiful, empathetic, and sharp girl. She is an avid listener of music and books. She loves the outdoors and would also watch TV all day if she could (not unlike many kids). But for us to meet her differing needs, and to support her best, we need to look closely at her. We need to focus on the differences and we needed to take our concerns to specialists.

We knew there was an alternative picture emerging. And it was a different night sky. An endlessly beautiful but puzzling night sky.

***

When she was three an early childhood teacher took me aside and described what she saw. Defensive at first, it took me a moment to stop and listen. Kids behave differently with other adults. Their chemistry is changed andtheir environment is altered. Mataamua’s teacher had an insight that we did not. We added her observations to the growing pile of letters detailing various physiological issues.

By the time she started school, there was no doubt that something was a miss.

Still, we were told not to worry and that all kids lag in one area or another. We were told that some kids tire more easily. That some kids are prone to sensory overload.

It didn’t matter what she had, but how we parented her.

Speech and language therapists, dietitians, pediatricians, our GP, occupational therapists, parenting courses, respite care. You name it.

And then – a geneticist.

One test revealed all.

It pointed us and several doctors to new areas to assess that wouldn’t have been explored otherwise. This included the discovery of tumours, and it explained so much about our girl.

We did all of this as university educated parents. I am a teacher – often for children with additional learning needs. We come from a large and supportive family consisting of counselors, social workers, social activists, and artists. We are health literate – and it was still difficult.

It wasn’t that people were resisting our pursuit for answers, but that each person was looking at the night sky from their own particular place in the world. We however, viewed her sky from the same perspective.

I never would have guessed a rare syndrome, and certainly wouldn’t have been looking for tumours.

Diagnosis does matter, if there is one to be found.

With it comes resources. Knowledge. New support networks.

Friends often describe her spark, her immediate radiant warmth. I can’t imagine a more bleak night sky without my shining Mataamua. She, and we – all need as many bright stars as we can get.

Jessie Moss is primary school teacher, musician, writer, keen runner and Te Reo Māori enthusiast who lives in Newtown, Wellington with her partner and their two daughters. She spends any spare time reading, thinking and writing about society, our histories and how we live today. Focusing on politics, education, gender and how Pākehā interact in Te Ao Māori.

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