Parents fighting to give birth to Down syndrome children

‘They almost broke me’: Parents fighting to give birth to children with Down syndrome
Stuff co.nz 18 July 2021
Down syndrome is caused by an extra chromosome. Many people with the condition lead busy, healthy lives. However, they may also have cognitive impairment and a range of physical health issues.

There’s no particular reason why a child is born with Down syndrome. It naturally occurs in the population, and is not usually passed down from generation to generation – meaning it can’t be eliminated.

However, data obtained by Stuff from the NZ Congenital Anomalies Registry shows a significant drop in the number of children born with Down syndrome over the past two decades. In 2000, one in 750 babies had the condition. By 2019, that number had fallen to one in 1200.

How come? Could it be that more parents – who know the genetic status of their unborn child – are choosing to terminate?

For privacy reasons, the Government does not collect the data that could answer that question. We don’t know how many parents who receive a Down syndrome diagnosis then choose to end the pregnancy. However, Professor Stephen Robertson, an expert in clinical genetics at Otago University, believes there’s no other credible explanation.

Well-informed choices?

Prenatal screening for Down syndrome has been available in New Zealand, in some form, since 1968. The technology has advanced significantly since then.

In 2007, a Government advisory panel found the process was “unsafe” and “ad hoc”. As a result, a national screening programme was launched in 2010, overseen by the National Screening Unit, a division of the Ministry of Health.

The ministry says screening exists to allow prospective parents to make “informed choices”. But advocates in the Down syndrome community believe parents aren’t making real choices, because they’re not fully informed.

Zandra Vaccarino, executive officer of the New Zealand Down Syndrome Association, is regularly contacted by pregnant women who say their doctors have only provided information about medical risks and termination options.

“Often, a diagnosis starts with, ‘I’m sorry to tell you’ or ‘I have bad news’. This language is, in itself, discriminatory,” says Vaccarino. “It reveals the health professional is carrying bias – and they may not even be aware of it.”

Medical terms used to describe Down syndrome are emotionally-loaded. It’s often described as a chromosome “abnormality”, a birth “defect” or a genetic “disorder”. Doctors describe health “risks”, not probabilities.

The ministry says there is “no standard script” for how diagnostic information is delivered to parents. It expects clinicians to provide “accurate, balanced and unbiased” information. This view is supported by the College of Midwives and the Royal Australian and New Zealand College of Obstetricians and Gynaecologists. Both organisations also have professional standards.

Vaccarino says the system lacks rigour. She wants all staff involved with screening to receive specialist training, to learn how to communicate in a neutral way. She also wants parents to receive more comprehensive information about Down syndrome, and to be given enough time to explore their options.

At a deeper level, however, Vaccarino is fundamentally opposed to children with Down syndrome being “screened out” on the basis of their disability.

“We do not consider that Down syndrome is, in itself, a reason for termination. We think they should be respected and valued as equal members of the community, and allowed to fulfil their potential.”