Family’s sad days near end
Lying asleep in her bassinet, little Myla Arbuthnot looks like any infant child.
Her tiny hands move slightly as she dreams. Her eyelids flutter as she drifts in and out of sleep.
Myla’s peaceful expression belies no signs of distress.
But when Micheline Arbuthnot gingerly picks up her 2-month-old baby, her condition is laid bare. She is almost lifeless in her mother’s arms, without enough strength to laugh, cry or even whimper. Her skin is tinged blue.
It is now, as South Africanborn Micheline Arbuthnot stares down at her only daughter and marvels at ‘‘how beautiful she is’’, that her voice breaks and the emotions get the better of her.
‘‘You carry this baby in your body for nine months . . . it’s not fair that we don’t get to keep her.’’
Myla was diagnosed with spinal muscular atrophy type 1 (SMA) when she was just a month old.
The disease is terminal and doctors told the family she has weeks, if not months to live.
Since then, six weeks have passed. Micheline and Kimble Arbuthnot have spent those weeks making sure she is as comfortable as she can be.
Doctors initially diagnosed Myla with a cold. When her cold improved but not her floppiness, they thought she may have a neurological or muscular issue.
‘‘We obviously knew at that stage it was something a little bit more difficult than a cold,’’ Kimble Arbuthnot said.
The prognosis came days later. The family were heartbroken. SMA is incredibly rare in New Zealand, with only a case of type 1 – the most severe – once every two years.
‘‘They didn’t specify exactly what lifespan they expected but said it’s either weeks or months,’’ Kimble Arbuthnot said.
About 80 per cent of children diagnosed with SMA die before they reach 8 months.
Myla showed symptoms soon after birth, putting her at the most severe end of the spectrum. As a result, the family have spent as much time as they can with Myla over the past month.
‘‘The last six weeks has pretty much gone as they said it would. She has progressively lost more and more strength,’’ Kimble Arbuthnot said.
In the past week, Myla lost the strength to latch on to her bottle, so she is now fed through a tube. The family can no longer take her for walks because she becomes distressed when moved.
‘‘The last few days she has been more and more distressed. We can see on the nurses’ faces it’s not too much longer.
‘‘It’s a process of getting towards the end. When it gets to the day and reality hits home, I think it will be really, really hard.’’