A rare life – day 15

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Miss Z at 3 months

I’ve been thinking about microcephaly lately. The Zika virus has brought it onto the front page of the news. And that reminded me that Miss Z has microcephaly.

Yes, I needed reminding of one of my daughter’s condions. Because, you see, none of Miss Z’s various doctors or specialists has ever really talked to us about it. I wasn’t even really sure if she had been “offically” diagnosed with microcephaly until quite recently (as in, a few weeks ago), when her paediatrician wrote a letter confirming it so that we would be eligible for funding (Queensland’s current system awards funding for therapies based on diagnosis, which leaves a lot of rare disease kids out in the cold unless they can fit into one of the other categories such as visual impairment or microcephaly – but that is a whole other rant).

Microcephaly has been a non-issue in our house, which is why it feels strange to suddenly see it being discussed as the bogey-man on the news. Not that it isn’t a bogey-man – it is a serious condition that can cause a whole range of developmental delays, intellectually and physically – but it isn’t our bogey-man.

Microcephaly is, in basic terms, a small head. The small head means that the brain hasn’t grown as it should. Some kids are born with microcephaly. Others develop it as they get older.

Miss Z was born with a normal head circumference of 35cm. It put her firmly in the 50th percentile on the growth chart.

A week later, when she was being checked and weighed at the GP, her head measured slightly smaller. It was still within the normal range on the growth chart, so the GP wasn’t too concerned. We assumed that the measurement taken at birth was probably a bit off – after all, measuring the head circumference of a baby isn’t always easy.

At her 6-week baby check-up, Miss Z’s head circumference had dropped off the chart. The paediatrician mentioned it, I shared my theory that her original head measurement was wrong, and that was it really. The paediatrician gave her a clean bill of health and we went home thinking all was well. Looking back, I wonder why he didn’t think that her head circumference was a red flag, because even if they had measured wrongly at birth, it was clear by 6 weeks that her head was not growing as it should.

By 6-months, when Miss Z had her first major seizure and ended up hospitalised, her head circumference had well and truly dropped off the chart. The word microcephaly was introduced to our vocabulary, but it was one of a number of issues and we were far more focused on her seizures.

Over the course of the next year, as all the tests for more obvious diagnoses came back negative, the focus shifted from diagnosing Miss Z to treating her symptoms. She started anti-seizure medications to control her seizures, therapies to help her physical development, thickened foods and eventually a feeding tube to help her eat… The fact she had a small head fell to the bottom of the list. She had two MRI scans of her brain – one when she was a baby and another when she was three – which confirmed that her brain wasn’t growing as it should. However, there was little we could do about the size of her head or the lack of white matter in her brain, so doctors, specialists, therapists and we as her parents focused instead on the things that we could affect.

And I haven’t really thought about it since, apart from a few jokes about how Miss Z has inherited my ‘pin head’ (I’ve got a small head and infamously used to wear child-sized swim goggles because they fit better…). Then the Zika virus hit the news and everyone is suddenly talking about microcephaly.

I don’t have any profound thoughts or words of advice for those mothers in Zika-affected areas who have babies with microcephaly or are concerned their child might be born with it. The condition is so broad and variable that my experience will have little relevance for anyone else. I just hope that even a fraction of the funds being spent to find a cure for Zika will be spent to help support the children being born with microcephaly, because at the end of the day, that is what will make the greatest difference to these children and their families.

 

 

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