Delivering a diagnosis

Prenatal diagnosis

Our 'Sharing the news and supporting families' brochure is available to all health professionals who are tasked with informing families of a diagnosis. See the download link to the right.

What materials are available for patients deciding whether or not to have testing?

The National ‘Prenatal Testing for Down syndrome - Fact Sheet’ is a great resource to have on hand and will help answer most questions that families may have about their options. See the download link to the right.

Increased risk

We prefer the term 'chance' when discussing increased risk. With the advent of more accurate screening for Down syndrome much earlier in pregnancy, more parents will receive a prenatal diagnosis than ever before. Receiving up-to-date, balanced information about Down syndrome is just as important at a 10 week blood screen as it is at a birth diagnosis.

Down Syndrome Victoria takes a neutral position on termination but advise that medical professionals be guided by patients as they discuss options available to them. By giving balanced information, referrals and allowing time for patients to absorb this information is incredibly important. Parents whose informed decisions are respected feel more comfortable about their decision in the long term.

"My radiographer was pushing me to have further tests… I was a 40 year old woman and was mortified at the push towards further testing and abortion. Very upsetting!"

Sharing the news
(Adobe PDF File)
Please note this brochure is NOT intended for families

"No-one said anything positive, all bad news about increased risk of health problems and disability. No-one told me how delightful she would be, how much I’d love her or how proud I’d be of her every accomplishment."

Prenatal Fact Sheet
(Adobe PDF File)
Discussing a diagnosis - A physician's guide
National Down Syndrome Congress

Diagnosis at birth

Consider the setting, time available, presence of both parents and privacy. Be empathetic, positive and use kind, person first language. Be welcoming of the baby and use positive comments to balance the necessary medical information. Provide up-to-date information from DSV and refer them for support at the earliest opportunity.

Remind parents that, while there are a lot of POTENTIAL medical consequences of Down syndrome, not all will apply to their baby. Encourage parents to take one day at a time and to enjoy their baby as the shock of a birth diagnosis can affect a parent’s ability to connect with their newborn affecting maternal bonding and the ability to breastfeed.

"The experience of the diagnosis was in fact devastating… If the news was handled differently, our first year with our son would have surely been a smoother ride..."

The power of language

Language can empower families or can reinforce limiting and out-dated stereotypes. Health professionals have a primary role to play in modelling Person First Language and show that the new baby with Down syndrome is not defined by his disability, ie. Oliver HAS Down syndrome…he is not a ‘Down syndrome’ baby. Respect the baby as an individual and a member of the family.
Two conversations that changed my life
A TED Talk by Tamara Taggart