Antenatal Testing for Down’s syndrome

There is a new test for Down’s syndrome in the news again today. You can read about it here. It is non-invasive, so it will reduce the numbers of miscarriages following a screening test for Down’s syndrome. That’s a good thing, right?

We tell ourselves that screening is all about information. It’s about preparing ourselves for the future, going into it with our eyes open. I would normally go all around the houses to make a pinprick point, but not today.

Today there is no room for that. Today is a day for the truth.

We lie.

It’s not about preparation at all. If it was, the numbers of babies screened away would be lower. Wouldn’t it? Expectant mothers carrying a baby with an extra chromosome wouldn’t be offered a termination after 30 weeks’ pregnancy, would they? Doctors wouldn’t come to visit you with faces of tragedy when they give you a diagnosis, and they wouldn’t tell you what they would do under the same circumstances. Midwives wouldn’t hurry to your home, clutching results and talking about decisions.

Children and young people who die young wouldn’t have Down’s syndrome written down as the unquestioned cause of their death.

It isn’t, you know. It’s part of life.

 

Making friends wherever we go.
Making friends wherever we go.
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15 thoughts on “Antenatal Testing for Down’s syndrome

  1. Yes. I hear the parents who prepared and who felt they needed to know, but they are very much in a tiny minority. This is about much more.

      1. No,no, no as soon as that looked likely they would raise the bar and tell us to have higher expectations……..too much value placed on academic potential instead of rounded, happy children 😞 When will people the world does not need to be full of academics

  2. Pregnancy is a symbiotic relationship. I respect a woman’s right to choose to carry or abort. Decisions are rarely simple, rarely taken lightly, and rarely without a sense of guilt.

    I rejected the old amniocentesis, struck by the paradox that it could identify a problem yet unnecessarily cause serious problems or loss. Neither of my children have down syndrome, other problems, but not that one.

    We’ve had a few intense periods of consultant involvement. We’ve only had the one very serious visit to hospital. We’ve been lucky. I’ve met mothers whose children have almost been raised in hospitals, enduring one operation after another. Children with down syndrome do have a higher risk of health complications, and it is important to highlight these are usually manageable.

    To-date no test will confirm for a parent if their child’s life will be short, long, healthy or full of pain. Any parent making a decision knows the test is part of the prognosis, what we know about our child is the rest.

    A mother in my post-natal group was much older and had been desperate to have a child. She rejected the amniocentesis. My opinion on whether to test changed after her experience.

    Many a first-time labour is accompanied by shock. The mother experienced both shock and grief when her daughter was born with down syndrome, and serious health complications as a result. The mother spent a great deal of time at hospital, watching her daughter in pain, who died long before her second birthday. The mother’s grief never yielded and she eventually took her own life.

    That mum was vocal about her regret in not taking the test. Had she done so, would she have aborted or continued down the same path? An impossible question. Medical science only offers probabilities and possibilities, no certainty. At the point of choosing to test or not, abort or not I believe the decision rests with the woman in the symbiotic relationship with that child. It is her decision and I don’t believe any woman faced with this decision should be demonised or deal with an abortion backlash.

    1. Important points – especially the one about probability, and no one being able to tell how your parenting life will turn out. I, too, know women who have lost their children, and for whom the journey into motherhood was very far from what they wanted or thought they were going in to. In my view, we can’t lay this at the feet of Down’s syndrome. We don’t have a monopoly on tragedy – or joy.

      As far as termination is concerned I live in the world of grey areas, but I know what it is like to be put under pressure, to feel the weight of other people’s disapproval. It’s strong, and hard to bear.

  3. I like your comment no group has the monopoly on joy or tragedy. Maybe that should be part of Cameron’s Parenting 101 course. 😉

    People (men, too) are changed by terminations – whether they proceed with it or not. Good counselling is important in making that decision without judgment or pressure. Medical care across the board still has a lot to learn from that offered to those on the ‘cancer journey’.

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