MICROCEPHALY & ME

This is what microcephaly looks like. Absolutely beautiful if you ask me.

Driving to the gym after a hard day at the office, Radio 4’s evening news bulletin drifted out of the stereo. I usually half-listen to the news and half-listen to the thoughts in my head while I half-concentrate on driving. But then I heard a familiar word and my ears pricked. ‘Microcephaly.’ A word my family know so well, but not a word I’d expect to hear on prime time news.

‘Oh hello microcephaly,’ I thought, turning up the volume. ‘What are you doing on the radio?’

It was the first of many times I’d hear about microcephaly in the coming weeks. Until then, it wasn’t a word known to many, but it is now. 

Mosquitos in South America have been passing the Zika virus on to unsuspecting humans in pandemic proportions. At the same time, there has been a rise in cases of children born with microcephaly and the World Health Organisation have suggested it would be a very big coincidence indeed if the two were not linked.

Defining microcephaly as a birth defect leaving children with unusually small heads, the WHO declared a global public health emergency and suggested pregnant women should avoid areas of the world with ongoing Zika virus transmission. In some countries, women are being advised not to fall pregnant for three years.

Now, I’m not saying women should rush to Rio and leave the mozzie spray at home. No-one would want their child to be born with any kind of limiting conditions. But as microcephaly became international headline news, I felt it was an apt time to dig out some seriously cute old photos and write an ode to my sister.

Pip was born with microcephaly 36 years ago, in August 1979, three years before I arrived.

One of my favourite photographs of all time. My brother and my sister having a moment.

After measuring small in scans, doctors warned my parents there might be a problem. Pip then spent the first few weeks of her life at Great Ormond Street Hospital while they ran tests.

Microcephalic and partially sighted, Pip’s labels were assigned.

Mum and Pip having a moment. I rather covet Mum’s jumper.

I grew up thinking she was just about the best playmate in the world, mostly because she let me be the leader and boss her around. She was patient, funny, adventurous and brave. She climbed the rope ladder to our treehouse and she swung the swings really high.

Swinging from the rafters.

Sunbathing.

When I got scared of the dark at night, she let me hold her hand down the side of our bunk beds. Thinking about it now, I slept on the top bunk so my hand hung down. She was on the bottom, so basically spent all night draining blood from her hand just to comfort her silly little sister.

Holding hands, just in case of monsters.

I used to feel so protective when people stared at Pip. I’d fix my furious glare back at them, waiting for them to glance at me so they could receive the full laser beam of my judgement right back.

As a teenager I discovered that in times gone by, microcephalics had two options. Live life in an institution or join the circus. They were known as ‘pin heads’ on account of their small heads and in the controversial 1932 film about the circus called ‘Freaks’ there were two characters with microcephaly. Coincidentally, they were called Pinhead Pip and Pinhead Zip.

The thought of people paying money to get a glimpse of my sister or any of her predecessors filled me with as much protective-sister rage as the rubber neckers of our youth. I didn’t want anyone to stare at Pip, unless she was making a funny joke that deserved a captive audience.

Pip found a hat. Let’s party.

I’m older and wiser now. You can go ahead and stare. Have a good look at my beautiful sister with her perfect white teeth and adorable moon-shaped eyes. She’s so witty I even have a Google Document at the ready so I can make a note of everything she says that should never be forgotten.

For example, in May 2015 Pip was watching CBeebies and I came in and remarked: ‘It’s a tough life isn’t it?’ To which she retorted, without missing a beat: ‘Not really, I enjoy it.’

The Shopping Sisters.

Thanks to the wonderful Royal National Institute for Blind People, Pip lives in an assisted living home with a few of her friends. She’s semi-independent and has a key-worker. (She innocently refers to the RNIB employees who work with her as ‘my staff’, which makes her sound like a millionaire or a princess, neither of which she is, unfortunately.) She also has her own bedroom in my home (and her own bedroom in many other people’s homes, now I come to think about it) where she has about 20 pairs of pyjamas and all the books we used to read as children in what she calls her ‘little tiny library’ on her bedside table.

In one of these books is the great King’s Breakfast poem, by A. A. Milne. It has a fantastic rhythm to it and Pip and I decided to learn it off by heart so we could show off how brilliant we are at parties. She’s nailed it, I still need the prompts. But we do like a little bit of butter to our bread.

It’s not just our family Pip has impacted. I take her out for weekends in Brighton, where a cherished old school friend lives. She has two young sons who adore Pip and if I turned up for a weekend without Pip beside me I’d be in awful trouble. We walk along the beach, sip tea, natter and chatter. Pip adores those boys and they adore her. I often watch them all chatting and playing with Lego and think that knowing Pip will be as wonderful for them as it’s been for me.

My hubby and Pip have a moment. Another of my favourite pictures of all time.

In fact, so many people have impressed me with their ability to ‘get’ Pip that I rarely have to get out my laser eye beams anymore. From friends to shopkeepers, she is adored. It can’t be helped when she comes out with clangers like this, from a time in House of Fraser, circa 2009. My friend asked a shop assistant if they had the dress she’d just tried on in blue. Pip listened intently, quietly.

Shop assistant: ‘Yes, we do do it in blue.’

Pip: ‘Haha. She said do do.’

You can’t write this stuff. But you can write it down. And I do (do).

Table for two.

I so often long to tell Pip just how much she means to me. How our enchanted childhood wrapping loo roll around each other’s bodies until we looked like Egyptian mummies, scoffing down pretend cakes at our pretend tea-parties, are memories I’ll cherish forever, but Pip’s learning difficulties mean it’s difficult to have too serious a conversation with her. But the other day she surprised me. We were sitting together flicking through magazines when Pip turned to me and said: ‘I’d never want to lose you, Kim.’

It was completely out of the blue and took me quite by surprise. Wrapping my arms around her I assured her she never will. I’ll always be there for her. But, should something happen to me, I know my family and an army of my friends will always look after her.

Ask nicely and we’ll do our poem recital for you.

I wouldn’t wish an incurable, abnormal brain development on anyone. The early years were scary and heartbreaking for my parents. She can’t contribute much to society and costs our local authority thousands of pounds a year for her keep. I’m aware that Pip, living in the Western world, has it a lot easier than children in developing countries. But to women in South America giving birth to children with microcephaly right now, I’d say this. Not everyone is lucky enough to have someone like Pip in their lives.

Pip, surrounded by family. Surrounded by love.