Report: Mothers told Down syndrome child will ‘ruin’ lives

A new Tasmanian report into prenatal care in Down syndrome pregnancies shows how far society has to go, says a disability advocate.

Down Syndrome Tasmania this week published a report that detailed the results of a survey of mothers whose babies were diagnosed as having, or highly likely to have, Down syndrome.

“All we were told was our child would have lots of appointments and not be able to achieve much,” one mother said of her experience in 2013.

Launceston’s Rebecca Kelly authored the report, which surveyed 58 mothers across Australia.

Dr Kelly said she was “struck” by the amount of negative language used around diagnoses.

“People are being told that (having a baby with Down syndrome) will ruin their lives, and ruin the lives of their other children,” Dr Kelly said.

“The concept that this is going to destroy your life is very outdated.”

Other mothers reported feeling pressured by their doctors to terminate their pregnancies, once the diagnosis had been confirmed.

Tasmanian Disability Education Reform Lobby founder Kristen Desmond said that the survey results showed that, by the wider community, Down syndrome was still viewed as a bad thing.

“These attitudes are limiting people before they are even born,” Ms Desmond said.

“We’re not actually valuing the contribution that they can make, and as a society, it shows how far we have to go. They are judged before they’ve had a chance.”

Dr Kelly said the results showed the clear need for clinical care framework to be developed.

She said framework, supported by a charter of prenatal care rights, would enable women to make an informed decision at each step of their pregnancy.

“I think if you had a charter of prenatal care rights, there it is, right in front of you, with what your rights are, so people are aware and doctors are protected, too,” Dr Kelly said.

Dr Kelly said the next step was to work with key health bodies to develop the framework and charter.

A spokesman for the Tasmanian Health Service said support for women whose child has been identified as being down with Down syndrome included referrals to high risk clinic, and access to social workers.