Negative Down’s syndrome leaflets axed

A leaflet over emphasising medical problems faced by some Down’s syndrome children has been scrapped following criticism.

The NHS Wales leaflet accompanied the rollout of the controversial non-invasive prenatal test (NIPT) in April, which tests for chromosomal conditions such as Down’s syndrome, and Trisomy 13 and 18.

92 per cent of unborn babies diagnosed with Down’s syndrome are aborted in England and Wales, and the new NIPT technique can identify Down’s with 98 per cent accuracy.

‘Healthy, fulfilled lives’

While the Welsh Government said the leaflets enabled parents to make informed choices, campaigners said women were being pushed towards abortions.

The original leaflet detailed medical abnormalities, such as head shape, eyelid slanting and looser muscles and joints.

The amended leaflet instead focuses on the strong survival rates of babies with Down’s syndrome – 90 per cent live past their fifth birthday – while most will live into their 60s.

It adds: “Most children and adults who have Down’s syndrome lead healthy and fulfilled lives and are included in their community. Most say they enjoy their lives and relationships.”

‘What’s the point?’

Mother-of-two Leah explained how she was advised to abort their daughter who has Down’s syndrome, with the midwife mentioning abortion “about 20 times” in their short consultation.

Her sister Darcie has Down’s syndrome, and so she had decided if her daughter tested positive for the condition, she would not abort.

The midwife told her “the purpose of the test is for terminations”, but Leah said “we know what we’re getting ourselves into, we just want to be prepared”.

The midwife replied: “Well what’s the point of having it then?”, adding that if the test was positive, then Leah needed to abort her child.

‘Horrible’

Leah said: “We came out of the consultation, my husband and I, literally as though we’d been punched in the guts.

“We just sat there, nearly tears in our eyes, looking at each other. We couldn’t believe what we’d just heard. It was horrible. Really horrible.”

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