I see The Sun (that pile of printed toilet wipes that some people mistake for a newspaper) have pulled out all the usual tropes in yesterday’s article about the mother who won a huge payout after bringing a Wrongful Birth suit against the NHS because her son was born with Down’s Syndrome.
‘… would not have wanted her child to suffer the way that disabled people suffer.’
‘ … has devoted herself to caring for him.’
It’s all bollocks of course, this stereotype of suffering and martyrdom. But it has its uses, I suppose — after all, it won this woman her payout and will win her a lot of sympathy. But she won’t find much sympathy coming from me.
She brought the case because she says that if she had known her son had Down’s Syndrome before he was born she would have terminated the pregnancy. But she didn’t win the case because her child was born with Down’s Syndrome, she won it because the NHS ‘neglected’ to perform the screening test that she had provisionally agreed to, after she later said ‘no’ when asked if she wanted the test to be carried out. It was a misunderstanding, a miscommunication, complicated by the fact that English is not the woman’s first language.
One thing that this case highlights is the need for healthcare professionals to be certain that their patients fully understand:
What the purpose of antenatal screening is.
How and when the screening will be performed,
Exactly what conditions it tests for,
How accurate it is likely to be in their individual case (positive predictive value), and
The implications of agreeing to screening.
In this case language was a significant factor. But even where language is not a factor, a lot of women are, it seems, ignorant of the limitations of screening — unaware that it is not infallible, not even diagnostic, that it’s accuracy (positive predictive value) can vary with age and other factors. Many seems to believe that a negative screening test means that their baby is ‘healthy’ and ‘perfect’.
Many people seeing the headline will not bother to delve into the nitty-gritty details of the judgment, or will not absorb them. They will not read down the article far enough to see that the judge added the comment: ‘Nothing I have said in this judgment should be interpreted as suggesting that the birth of a child with Down’s Syndrome must be seen as unwelcome.’ That’s exactly how many people will interpret this: that the woman was paid out because the trust were negligent in not detecting, diagnosing and destroying this child; that the birth was ‘wrongful’ because babies with Down’s Syndrome should not be born.
This case further normalises the idea that people with Down’s Syndrome should not be born, should not exist. It normalises the idea that they have no right to life. And that has a knock-on effect on those living with the condition, because a society that thinks that abortion is the correct answer to Down’s Syndrome is a society that sees no reason to accept people with Down’s Syndrome, it is a society that sees no reason NOT to discriminate against them; it is a society that fails to see why it should bother to consider their needs for healthcare, education, a family life, or human rights.
This woman has done nothing but harm to people with Down’s Syndrome, and their families — the whole Down’s Syndrome community of which she and her son are a part — by legitimising the stigma directed against us. In bringing a costly ‘Wrongful Birth’ suit against the NHS she has actually done a great deal of harm to her fellow women also, by further eroding their ‘right to choose’ — which, don’t forget, also includes the right NOT to agree to screening, and NOT to have an abortion. She has increased the likelihood that in the future more women will face strong pressure to undergo screening, and to terminate the pregnancy in case of a positive result, by an NHS, and individual practitioners, terrified of expensive litigation.
Perhaps it is not surprising, under the circumstances, that this mother failed to see the bigger picture. But there is one small, very personal picture that she has also failed to see: the picture in which her son learns to read, and to understand what he is reading, and somehow finds out about this law suit and grasps the full implications of it — that his own mother thought he should never have been born. That his own mother didn’t want him.
This is not an unlikely scenario.
You may ask what right I have to stand in judgment over this woman. I see it not so much as my right, but as my duty, as a member of society and as a human being, to question the ethical and moral implications of this case and others like it; and to point out that it is not this little boy’s birth that was wrongful, but his mother’s law suit.
We, as a society, should be deeply ashamed of, and alarmed by, the concept of ‘Wrongful Birth’.
It is not the duty of the NHS to detect and destroy every foetus that has a congenital condition or disability — it is not the duty of the NHS to mitigate for personal risk-taking. Because to bring a child into the world IS to undertake an exercise in risk: hope for the future versus the possibility of grief. There are no guarantees in this life. Even if your child is born without any congenital condition or disability, there is always the chance that they may meet with a life-changing illness or accident later, they may die before you, or may simply become the sort of person whose actions cause you personal anguish. This is the ‘risk’ you take when you decide to become a parent. None of us has the right to expect perfection in others, or in life.