What would you say if I told you that you can now undergo pregnancy screening for shyness, anxiety, ADHD, autistic behaviours, and learning and communication difficulties?
These are symptoms of Fragile X Syndrome (FXS) which is an inherited genetic condition. A study by researchers at the Murdoch Children’s Research Institute and the University of Melbourne has resulted in a push for screening of mothers before conception, or during pregnancy.
Medical director of Genetic Clinics Australia Jonathan Cohen, who is also the study’s co-author, told the ABC that testing pre-conception gave them options.
“They can still go down that path if they wish — they can get pregnant, get tested and terminate, or not terminate,” he said.
“Or they can go through IVF PGD — which is pre-implantation genetic diagnosis.
“That’s when an embryo is made, the embryo gets tested and only the unaffected embryo is implanted.”
About one in 250 women carry the gene that can cause Fragile X – can being the operative word. Not all FXS-carriers will present with symptoms, and not all FXS-carriers will pass it on to their offspring. FXS affects around 1 in 3,600 boys and 1 in 4,000-6,000 girls (according to Better Health Victoria), with symptoms ranging from mild to severe. Advocates of screening have emphasised the link between autism and FXS, however the reasoning is tenuous at best when you consider that, in Australia, 1 in 100 people are diagnosed as being on the autism spectrum. Therefore, most people with FXS do not have autism, nor do all people with autism have FXS.
How much screening is ok?
The factor we should all be very concerned about when more and more pregnancy screening is offered, is discrimination. Discriminating against a person based on their disability, special needs, gender, looks and so on, we would all agree, is unacceptable. However, when this premise is applied to the pre-born, the rules seem to change.
‘Designer babies’ are our futuristic right – the right to choose what gender, hair colour, eye colour, probable intelligence, and to eliminate any prevalence of disease or disability. We can’t help ourselves, we want to maintain control over our lives, even to the point of human genetic modification. We shudder at the historical examples of ethnic cleansing, but what about genetic cleansing? Out of sight, out of mind, perhaps? Another example of how the womb – which should be the safest place in the world for our babies – becomes a tomb.
The stress of screening.
We know that women who receive a prenatal diagnosis of disability come under immense pressure and stress.
A recent Down Syndrome Tasmania report titled Carrying a baby with Down syndrome: Women’s experiences of prenatal screening, diagnosis and pregnancy care, by Dr Rebecca Kelly, summarises responses to a survey of 58 women who received their pregnancy care in Australia (all states and territories are represented) where their baby was either diagnosed or identified as having a high likelihood of having Down syndrome during the pregnancy.
In her findings, Dr Kelly reports “significant failings in the way that prenatal screening programs are being run and the way results from screening and diagnostic tests are being delivered.”
“All too often women provide accounts characterised by a lack of respect for their choices, provision of little to no information or support and out-dated, ableist and very negative perceptions of Down syndrome,” she says.
According to the report, more than 40% of women were offered an abortion after screening results only, without a confirmed diagnosis; 56% of women were offered an abortion after receiving a confirmed diagnosis; and a third of women were never offered an abortion. This is particularly concerning when taking into account that only 7% of women were given any up-to-date information on Down syndrome and other conditions being tested for before screening tests; 23% before invasive testing; and 40% after a confirmed diagnosis.
So you’ve had your screening, what now?
You’ve been given a pre-natal diagnosis that you didn’t want to hear. You’re grieving. The perfect baby you’ve been imagining as the new member of your family now has a different face, a different future, a different set of needs. The rosy glasses of parenthood are on the pavement in front of you, smashed by the heel of a doctor’s boot, warped and unwearable.
The reality is that most of the advice you will receive at this point will be to have an abortion. It’s been proven via such-and-such a screening method that your baby has a certain percentage chance of being born with this or that disability or impairment. It’s shocking. Horrifying. And they’re saying you’re best to cut your losses and start afresh. They are professionals, and you respect their advice.
But what if they’re wrong?
There are so many other scenarios that should be considered in this situation. Firstly, there are countless examples of pre-natal diagnoses that were proven completely false when a healthy baby was born, without the fated condition. Secondly, what if life with a child who has a particular disability isn’t as bad as you thought? In fact, what if it changes your life for the better?
The best thing you can do is to talk to someone who once stood in your shoes, at this threshold of unknowing. Ask the parent of a child with Down syndrome or FXS what their life is like. Ask them, if they had their time again, would they have aborted their baby?
Watch Veronica’s story – her son Jimmy has Down syndrome.