By Rachael Wong
It’s time we had an honest and considered conversation about prenatal screening for disability.
Recently it was reported that a British mother was encouraged four times by doctors to have an abortion, after her unborn daughter was diagnosed with two life-threatening conditions – the first being hydrops fetalis, which causes severe swelling, and the second, cystic hygroma, which causes defects. Then on 9 May 2020, she gave birth to a perfectly healthy “miracle baby”, with both conditions inexplicably having disappeared.
Incredible as this story is, it is not the only one of its kind. There are numerous stories of children diagnosed in utero with a range of conditions, only to be born perfectly healthy or to defy the odds with the appropriate care.
Last December in Brisbane, baby Brianna “delivered a Christmas miracle for her family.” Brianna was diagnosed in pregnancy with a rare and terminal genetic condition called pontocerebellar hypoplasia, which affects the development of the brain. She was given anywhere between a few hours and young adulthood to live and her family was told to “terminate” the pregnancy. However, after she was born, there was no sign of the initial diagnostic symptoms; she was completely healthy.
Another extraordinary story is that of Noah Wall, who was born with only two per cent of his brain. He was also diagnosed with spina bifida and hydrocephalus. Doctors doubted he would survive and his parents were told five times to abort him. However, by age three, Noah’s brain had incredibly grown to 80 per cent. Today, the eight-year-old is a “practical joker” whose cognitive and behavioural development continue to astound medical professionals.
How many women have undergone abortions based on inaccurate or overly pessimistic prenatal diagnoses? How many women who receive a prenatal diagnosis are being pressured into terminating their pregnancies? What does it say about our society when we protect the strong, discard the sick and disabled, and pre-judge what kind of life a person will live before they are even born?
Questionable reliability and delivery of prenatal diagnoses
Prenatal testing is a multibillion-dollar industry that has become more popular with the rise of non-invasive prenatal testing (NIPT) and is routinely offered to pregnant women in Australia. But the tests are not completely reliable – particularly NIPT, which involves examining samples of the baby’s DNA in the mother’s blood, rather than testing the baby directly. Even more problematic, is that this is not always communicated properly to women.
In the UK, the Nuffield Council on Bioethics has raised concerns about NIPT – including the misleading use of statistics, poor information about the genetic conditions being tested for, and a lack of follow-up support. In November last year, the UK Advertising Standards Authority banned three prenatal testing ads for using misleading statistics. The decision came after an Irish couple aborted a healthy baby boy on the basis of an incorrect Trisomy 18 NIPT screening result.
In Australia, the Medical Services Advisory Committee (MSAC) recently decided not to recommend that NIPT be publicly funded by the Government on the basis that it would not be cost-effective. While the outcome is a positive one, it is nevertheless concerning that the decision was made on financial grounds only.
Down Syndrome Australia stated that it was pleased with the MSAC decision, as further work must be done to ensure families are getting the information and support they need to make informed decisions. Its CEO, Ellen Skladzien stated:
“It is unethical to implement a screening test in any population without providing the appropriate referrals and supports including up-to-date and accurate information.
The misinformation, coercion and lack of support experienced by some parents undergoing prenatal screening constitutes a form of neglect and abuse within the health care system. We will continue to advocate for change to ensure all women have access to clear and accurate information both before screening and after any unanticipated results.”
Pressure on women to abort
The most common stories of women being pressured by medical professionals to terminate their pregnancies after a prenatal diagnosis are mothers of children with Down syndrome (children who do not have a fatal diagnosis, and who if supported to do so, often go on to live full and happy lives).
In Perth, a mother was told to abort her daughter and simply “try again for a normal one”. A NSW mother was told that her husband would leave her, that she would lose her job, and that the baby would have a poor quality of life as well as ruining the quality of life of her existing children. A Tasmanian mother was repeatedly pressured to have an abortion throughout her pregnancy, despite refusing one at the very outset.
All of these mothers complained that the information they received was either inaccurate, skewed or out of date and heavily prejudiced towards encouraging termination.
When it comes to abortion, choice is considered paramount, but what kind of choice do women have when they are being misinformed or coerced? Is the growing popularity of prenatal screening creating a societal expectation, or even an obligation, on women to abort children who do not fit society’s stereotypes of perfection?
Discrimination against persons with disabilities
Countries like Iceland have been celebrating nearly “eradicating Down syndrome”. In other words, they are nearing a 100% elimination rate for aborting every child who is diagnosed with the condition. In Australia, more than 90% of children diagnosed with Down syndrome are aborted.
But how do we reconcile the systematic elimination of such children with a society that is meant to be fighting against discrimination and working towards greater diversity and inclusiveness, particularly for persons with disabilities? Stories from the current Disability Royal Commission of the health system failing children with disabilities are a damning indictment that we need to do much, much more in this regard.
There is no doubt that a prenatal diagnosis could be terrifying for parents who only want what’s best for their child. This is even more likely to be the case when the right information and support is not available and where outdated prejudicial attitudes regarding disability persist.
But what if women were given balanced, accurate, up-to-date information and the appropriate support? What if we chose to reject harmful stereotypes of perfection and treated every child as a miracle? Perhaps then, we might make some real progress towards a truly just, supportive and inclusive society.
Rachael Wong is the CEO of Women’s Forum Australia