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Guest post: "My daughter has microcephaly, but she's not 'defective'"

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MumsnetGuestPosts · 19/02/2016 11:14

At the 20 week scan for our first baby, I found myself in an MRI scanner with our happily ever after hanging in the balance.

Our baby's head was measuring small – very small. We found out then that rather than having two distinct hemispheres, our daughter's brain is completely fused at the front – a condition known as holoprosencephaly. Because her brain did not develop conventionally, neither did her head; we were given a further diagnosis of microcephaly.

It was an exceptionally bleak prognosis. We were told that our baby would probably not make it to term. If she did, it would be unlikely that she would survive labour, and in the exceptional circumstance that she did, her life would be very short and would have little or no quality. When the neonatologist handed me a tissue, she was crying too.

In simple terms, microcephaly means having a clinically small head and is an indicator of developmental damage to the brain. The cause of Imogen's microcephaly is her holoprosencephaly, and all subsequent diagnoses have been linked to that. Microcephaly has always been secondary; it sits on the long list of clinical issues, unmentioned, untreated – it just is.

At least it was, until the spread of the Zika virus made international news. The Zika virus has been linked to a sharp increase in microcephaly diagnoses in Central and South America. Suddenly the world has an opinion. Lots of opinions.

I watched footage of babies with the familiar head shape, cradled by their mothers, unaware of the furore surrounding them. Babies who were there to illustrate the condition, to evoke pity or, more worryingly, fear in viewers. The message is clear: look at how awful this virus is, look at how alarming and disturbing the consequences are. It left me feeling deeply uncomfortable. I wanted to protect the babies from the judgemental gaze of the world, I wanted to protect their mothers from the fear and the shock, and I wanted to tell them that they would be okay. The term used again and again was 'birth defect'. How I hate that term, birth defect. Defect: a shortcoming, imperfection, or lack. These babies are not lacking, have not fallen short and are no more imperfect than any of us.

I find the coverage so unsettling because the reality of our story turned out to be quite different to the prognosis. When Imogen was born she exceeded all expectations, could breathe independently and breastfeed. When she was three days old we were sent home. We were in shock; we hadn't planned for a baby. We'd bought one babygrow. We had to borrow a car seat to get home.

Today Imogen is four. She is bright, clever, cheeky and funny. She uses a wheelchair and is non-verbal but uses Makaton to communicate. She is gastrostomy tube fed, although she can eat recreationally. Most importantly she has benefited from exceptional early intervention therapies including physio, occupational therapy, speech and language and portage. It has been a difficult and emotionally challenging road. I say that in the knowledge that comparatively, we've had it easy, with amazing NHS services, medicines and therapies. We live in a city that has exceptional specialist schools and, for the most part, the infrastructure to make life accessible. We have access to social media and have made friends across the world who are living happy lives with the same conditions. Their friendship makes me feel less alone, less scared.

Some of the news reports list the likely medical complications associated with microcephaly: seizures, developmental and cognitive delays, motor function disorders, speech and language delays, feeding difficulties. They then move on to the measures being taken to prevent further spread and we are told that scientists are racing to develop a vaccine. It is without question right that all possible measures should be taken to avoid the spread of the Zika virus and to prevent what would otherwise have been healthy babies being affected. But when it falls from the news agenda and the eyes of the world are diverted, what will happen to the babies and families already affected?

Will international resources also be put into supporting early intervention help for those children? Will measures be taken to ensure that the services that have transformed my daughter's quality of life are made available to all those mothers who cradled their babies in front of the world's press at their most vulnerable moment? Or will they be left to deal with the realities of complex needs parenting alone, perhaps while living below the poverty line? Will all these mothers be able to reach out and find support on Facebook groups and parenting websites the way I have? I can only hope that the current high profile of microcephaly makes getting the right care and support for their children, and for themselves, slightly easier than it might otherwise have been.

As for the future and life with microcephaly, here is what I have learnt. Every single child will write their own story, do their own thing, irrespective of diagnosis, prognosis, text books and World Health Organisation advice. It's hard work. As parents, all we can do is deal with symptoms as they arise, fight hard for the best support available to us, not take anything at face value when it comes to can't and won't. And most importantly, love without condition. Love, love, love, so much that nobody could ever question your child's quality of life – because how can any life so filled with love be described as defective?

Unconventional, without question.

Defective, absolutely not.

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Owllady · 19/02/2016 12:35

I've been a bit about the news coverage too and also have a child with microcephaly. As far as I've been made aware, it is just a clinical diagnosis that means the brain is smaller than it should be and it can be a pointer as to what has caused the developmental delay. Which is why I was a bit shocked at BBC breakfast having two different people with microcephaly on, saying 'look at this person with microcephaly, this is what they can do!' look at this other one, they can do this… I'm sure it was done with the best intentions but it was really patronising as its just a clinical dx, not an actual condition iykwim. I'm not sure I'm making any sense as I've been up since 5am! I actually said to my mum, x has microcephaly you know, no she didn't know. I don't think any of our family know, but this was following being confronted by a newspaper in the co-op with the headline 'shrunken head syndrome'

I imagine the children who are being affected by the zika virus will have their own diagnosis eventually, something imaginative like zika syndrome.

I'm so pleased your daughter has proved the medical world wrong. It must have been so difficult to prepare for that, you were very brave but she was obviously meant to be here :)