Our discussion paper on prenatal screening for Down syndrome

Our discussion paper on prenatal screening for Down syndrome thumbnail.

Our discussion paper on prenatal screening for Down syndrome

October 7, 2021

In July and August 2021, Down Syndrome Australia undertook a survey to understand contemporary prenatal screening experiences. The survey received 320 responses from parents who have a child under the age of 10 with Down syndrome. Disturbingly, the experiences shared reveal that it is still commonplace for prospective parents to be given misinformation about life with Down syndrome as they navigate prenatal screening decision making.

Read our discussion paper on prenatal screening in PDF here.

Read our discussion paper on prenatal screening in Word here.

From our CEO

The first few months of pregnancy are often filled with excitement, anticipation, and sometimes a bit of worry. Parents often wonder what their child look like, what their personality will be like, or what kind of parent they will be. 

Many families choose to undergo prenatal screening. For some, this is with the idea that more information is better, or simply wanting to know as early as possible whether they are having a girl or a boy. Others undergo screening because they want to know if the baby is healthy. For many parents it has become a routine part of prenatal healthcare and they don’t realise it is a choice. Few families are given information about screening, the conditions that are being screened for, or decisions they may need to make after receiving a result. 

After screening, some families receive the result that their unborn child has a high chance of having Down syndrome. This may be the first time to think about what it might be like to have a child that needs additional supports. The results can be surprising and confronting at first, with many questioning what it will mean for them and their family.  

Over the last decade, families of children with Down syndrome have told us many stories about not receiving the right supports during pregnancy. We have heard horrific stories about doctors telling people that their child would have a lifetime of suffering. We have also heard of terminations being booked before a family has been able to process the possibility of having a child with Down syndrome. 

In 2021 we decided we needed to hear more from families about their experiences. We wanted to document the experiences families have had when they were told their child had a high chance of having Down syndrome. We heard from 320 Australian families who have a child with Down syndrome under 10 years old. Even though we already knew the challenges that families face, the results were shocking.

Nearly half of the families surveyed felt pressure from medical professionals to terminate their pregnancy. 

More than 40 per cent of families reported that they had received negative and inaccurate information about Down syndrome from a health professional when they were trying to make their decision. Nearly 70 per cent felt that they did not get the information they needed to understand what life was like for a person with Down syndrome and their families.

But perhaps most shocking were the stories the families told us. Stories about being told of a diagnosis at work without any support. Families being asked if they wanted to terminate at every medical appointment. Mums being told that their child would never walk, talk, or go to school.  Families being told that they should think of their baby as a vegetable.

Even after their child was born, families were confronted with people asking ‘Didn’t you get tested?’ or suggesting that they should have chosen to terminate a baby who would be born with a disability.

These stories reflect the discrimination that is pervasive in the community about people with intellectual disability. Families have been traumatized and their memories of pregnancy and the early days with their baby are tainted with thoughts of doctors saying terrible things about what their child would not be able to do, or the impact that their baby would have on their family.

We urgently need to address the discrimination and stigma in the health care system medical professionals have towards people with Down syndrome. We need to fight to change the way we support families around prenatal screening. We need to create a system where access to balanced and accurate information is the norm, not the exception. 

Every family should feel supported to make an informed decision on their own terms, to learn about Down syndrome and intellectual disability, and to have the opportunity to meet people with Down syndrome in their own community. 

Ellen Skladzien

CEO Down Syndrome Australia

Read our discussion paper on prenatal screening for Down syndrome in PDF here.

Read our discussion paper on prenatal screening in Word here.