Pregnant women with Down syndrome diagnoses, whether confirmed or unconfirmed, are under immense pressure to terminate, a new study has found. Even in cases where women have clearly expressed their intention to continue the pregnancy, abortion continues to be offered a second and third time – and sometimes relentlessly for the duration of the pregnancy.
The 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.
“They weren’t just negative, they told us our baby would most probably die in utero but if she survived she would be in hospital for most of her “short” life, never walk, talk or have any quality of life.”
– #13 Baby, born 2005*.
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.”
“While some women provide accounts of positive experiences where they felt their decisions were respected and that they were supported by their medical teams, 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.
“Our doctor was completely against us continuing with my pregnancy. She wanted us to terminate even though my son was born completely healthy with Down syndrome and no major health issues.”
– #45 Baby, born 2015*.
Further evidence of failings
Other alarming findings include:
– After refusing the initial suggestion of abortion, 65% of women were offered abortion again during the pregnancy; 27% of whom said they were offered abortion “a few times” and 22% of whom were offered abortion “frequently”.
– While nearly one third of the women surveyed never received a confirmed diagnosis of Down syndrome, they continued to be offered abortions right up to 36 weeks, with 50% of them being offered abortion later than 20 weeks.
– 9% were offered “comfort care”, that is, keeping the baby comfortable but making no active efforts to keep them alive after birth.
– 60% of participants rated the delivery of their screening and/or diagnostic test results as “poor” or “very poor”. The common themes amongst this group were the negativity of the language and discussions, and the presumption that termination was the logical next step.
– 62% described the language of their medical team as being negative, clearly indicating that Down syndrome was a bad outcome with expressions like, “I’m sorry” and “bad news”. Only 4% described the language of their medical team as positive.
“The first words from the doctor who delivered [him] were, ‘I’m sorry’. Right from the moment he was born it felt like the doctors and most nurses/midwives were unsure of what to say.”
– #53 Baby, born 2011*.
In an interview with Lateline on the report, Australian Medical Association president Michael Gannon said it was, “unfortunate if people feel that pressure once they’ve made their decision.”
“That is sad and that is entirely inappropriate. If individual couples are given information and they make the choice to continue the pregnancy, they should be supported in that decision-making,” he said.
Dr Kelly’s report recommends changes based on the findings. They include:
– Provision of up-to-date resources to women before they undertake screening.
– A ‘sign to screen’ approach so women explicitly give informed consent to undertake screening.
– Standards around the use of neutral language in discussing screening and results, as well as options around continuing or terminating their pregnancy. The options of adoption or long term foster placement should be included in this. Read more about Dr Kelly’s work on this HERE.
– Guidelines on follow-up testing, and support for women who continue their pregnancies that continues beyond birth.
– Appropriate emotional support for women who choose abortion as well as those considering adoption or long term foster placement.
– Accessible resources that describe the conditions being tested for, life outcomes for people with the conditions, links and contacts to relevant organisations.
“We were bumped around to different hospitals. Care became so focused on Down syndrome and duodenal atresia that basic pregnancy things were left by the way side. No one was screening my urine, no gestational diabetes test was done, no testing of my iron levels etc. All the routine things I had with my first were totally ignored. I became the incubator of a 26 child that they felt probably should have been terminated. This attitude continued into my postnatal care as well.”
– #54 Baby, born 2015*.
* All quotations in bold are from the report, which includes significant anecdotal evidence to maintain and uphold the voices of the participants and give a real-life understanding of experiences.
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