One child in 700 in the UK is born with a cleft. As his son turns four, one father tells of his family’s agony over conflicting medical advice, and travels to Kerala in India to see how a charity is changing the fortunes of thousands of children
In May 2011, my wife and I discovered that our first child had a cleft lip and palate. The diagnosis took place in the 22nd week of pregnancy. Unsurprisingly, the news came as a considerable shock, made worse by the fact that, just a few months earlier, we’d been forced to terminate another pregnancy at 18 weeks after the foetus was discovered to have a rare and fatal disorder that meant crucial internal organs would never develop. This new diagnosis – which turned out to be unrelated to what had gone wrong previously – caught us wholly unawares. In common with most people, we knew little about clefts. Despite being the most common birth defect, with an incidence of roughly 1 in 700 in the UK, clefts are, particularly in developed countries, seldom discussed and largely invisible. Before hearing the sonographer’s verdict that day, I’d never knowingly met or even seen anyone who had one. I vaguely knew that “hare lips” were associated with inbreeding – and, by extension, were common in remote rural communities – and I’d read JM Coetzee’s Life & Times of Michael K, whose protagonist has a cleft. But that was about the extent of my knowledge.
Learning that your child has a disability, no matter how mild (and as birth defects go, clefts are mild), is a shock on several levels. There’s the selfish impulse to ask: “Why me?” (In our case, this was magnified by a further question: “Why us, again?”) Equally selfishly, there’s the fear of what it will entail, the worry and disruption that it may cause. Pretty much every parent, I think, starts from the assumption that his or her child will be normal (whatever that really means). This assumption is so deeply embedded that any certain knowledge of abnormality represents a serious blow. You instantly feel as if you are crossing a threshold, being drawn into another, unwelcome kind of existence. How will you cope, you find yourself asking, with having a child who isn’t the flawless being you not only expected but, in some sense, considered your right? And how, no less importantly, will other people’s reactions affect you?
Parenthood is a leap into the unknown. If you learn your child has a defect, the sense of being in the dark intensifies
For most of human history, a cleft has guaranteed a wretched existence – or indeed no existence at all
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from Pregnancy | The Guardian http://ift.tt/1RsiB0q