What Zika virus means to me

“Zika virus could be bigger global health threat than Ebola” … “WHO holds emergency meeting” … “Global health emergency” … “Obama has a new plan to fight Zika,” scream the headlines. There’s something fascinating about an emerging tropical disease isn’t there? No matter how much sympathy we feel for people caught up in the Ebola crisis, for instance, we can’t help gorging – from the comfort of our western homes and hospitals – on the gory details of whole African villages haemorrhaging to death. And Zika virus is somehow more fascinating, more ‘can’t turn away’-terrifying because its effects are insidious. The symptoms are mild; most people don’t even realise they’ve got it. Unless, that is, they are a pregnant woman. And then it does grotesque, terrifying things to the unborn foetus that may not become apparent until birth. Microcephaly. It’s a ready-made horror story.

Except it isn’t. Microcephaly is neither a new phenomenon nor a horror story. It is something close to the hearts of many families throughout the world. Estimates suggest that (pre-Zika) it affects at least two in every 10,000 live births. That puts it in the category of ‘rare diseases’ but by no means the rarest. And now these families, families like ours, find ourselves thrust into the limelight, and not in a particularly good way, with media comments such as “microcephaly is a lifetime disaster” becoming the norm.

Microcephaly literally means ‘small head’ and is caused by a small brain – whether due to a genetic disorder, trauma, or infection. It can be an isolated symptom in an otherwise ‘normal’ individual, or one of many manifestations of a complex, known or unknown, condition. Consequently, the effects of microcephaly can range from mild to severe and may include physical disabilities, learning disabilities, developmental delay and epilepsy. For my son Benjamin, whose microcephaly is towards the severe end of the range, it means he is non-mobile, non-verbal, incontinent, epileptic, developmentally delayed (at two years he is functioning roughly at the level of a two-month-old), fed through a tube into his stomach, and on a daily cocktail of medications. He is also the most contented, smiliest little boy – and a complete flirt with the ladies to boot.

The face of microcephaly to me

The face of microcephaly to me

I have read several great commentaries by parents of children with microcephaly (for example this one from The Heartful Mom, or this interview in The Washington Post) arguing forcefully against the bad press applied to those with the condition. I couldn’t improve upon these, so instead offer up a few thoughts that the Zika crisis has thrown up.

From a personal perspective, as the parent of a child with an undiagnosed condition, I am constantly on the alert for possible explanations. My initial thought – however illogical – on hearing of the proposed link between Zika and microcephaly was could Benjamin’s microcephaly have been caused by Zika virus? Although I did used to travel the world – for work and pleasure – and generally had a pretty laissez-faire attitude to health precautions, that has all been curtailed by the arrival of children. The last time I was in the Americas was 2009 (an amazing trip to Guatemala where, among other things, my husband proposed to me on an active volcano). This was four years before Benjamin was born, and at least five years before the disease became prevalent, so I am clutching at some pretty invisible straws here! There remains the possibility that I could have contracted some other virus during pregnancy, but tests for all the likely contenders (toxoplasmosis, rubella, cytomegalovirus, herpes simplex, HIV, syphilis and measles) have come back negative. I also found myself increasingly drawn to the conspiracy theories suggesting that the microcephaly ‘outbreak’ does not result from Zika virus at all, but from the mass inoculation of pregnant woman against whooping cough using the DtAP vaccine, which was initiated in Brazil at around the same time as the virus emerged. Being both pregnant and paranoid, I already had small concerns in my mind, because having the DtAP vaccine was the only thing I did during pregnancy with Benjamin that I did not do with Jackie. Could this have been the cause of his condition? In the end, I have tried to override my paranoia and had the jab in my current pregnancy too, but I did leave it until a much later stage.

But these are really academic, irrelevant questions. Looking outward there are much bigger concerns. For most of us, this is just another of the many issues facing families in other parts of the world – maybe even a relatively minor one in the face of war, famine, or natural disaster. Having no experience of any of these things, it’s easy to put them to the back of our minds and carry on with our day to day lives, maybe popping some loose change in a collecting tin when it’s rattled under our noses. Microcephaly, however, stares me in the face every day. We manage Benjamin’s condition, keep him healthy, happy, growing and developing, because we receive a huge amount of input from health professionals, therapists, educators, social workers, our wonderful hospice, etc., etc., etc. How are mothers in the Zika-affected countries going to cope without such comprehensive help? How are already stretched or non-existent health services going to treat thousands of children – children like my Benjamin – with microcephaly? Are pregnant women in Zika zones going to be encouraged to abort their babies just in case? How can we help? Both UNICEF and Save The Children are accepting donations for programs of education, research, providing mosquito nets and removing mosquito-breeding grounds – aimed at prevention of further cases, but I have yet to find an organisation actively supporting the children and families already affected by the outbreak. Microcephaly need not be a ‘lifetime disaster,’ if we can find a way to help.

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