We mothers of children with Down’s syndrome know something the experts never will

A mother and daughter at an awareness-raising event for children with Down's syndrome in America (AP)

Like Sally Phillips, who hosted A World without Down’s Syndrome? last night on BBC2, I have a child born with that extra chromosome. So you could say I had a vested interest in what she said. In effect, the programme kept returning to the question, which Sally reflected on several times: “Do you want a world without Olly?” (her own mischievous 12-year-old son) – or in my own case, “Can I conceive of a world without Cecilia?”

The answer in both cases is, “Of course not.” But it is the question that the experts, the doctors, nurses and other professionals who “counsel” pregnant women whose ante-natal test for Down’s has come back positive, never raise. For them it is simply an abstract matter of “disability – possibly severe”, “a heavy burden”, a “woman’s choice”, never a discussion of a living human being, a person with a name, who has the same longing to be loved as the rest of us.

One of my sons, who also watched the programme, phoned me afterwards and pointed out that when people talk of “normal” babies instead of disabled ones, they also never say to the mother (fathers were not in evidence last night), “By the way, please consider that a normal child can also bring a lot of grief; they may become a drug addict, an alcoholic, or be in and out of prison, or become disabled through disease or a car crash and so on.”

In other words, it is futile to predict what the future will hold for the child you are carrying, or how you will respond when they are born, so the most natural thing (rather than the invasive and eugenic response) is to let nature take its course. The pressures of modern society won’t let us do this. Ignorance is not necessarily bliss, but it can sometimes trigger a more humane response, as in the mother who once said to me, “If I had known my little boy had Down’s before he was born, I would probably have aborted him – but now (gazing at her cheeky 2-year-old in a pair of too-large jeans) it would be unthinkable.”

Sally Phillips rightly kept a religious viewpoint out of her programme. Yet Catholics, who take sin seriously, might also reflect on the remark one woman made to me when Cecilia was born, “She will never commit a mortal sin.” Perhaps someone should point that out to those, as in last night’s programme, who keep emphasising the “burden” of disability.