Morley tot joins campaign against new Down syndrome pre-natal test

editorial image
0
Have your say

The family of a Morley tot has joined forces with a campaign group protesting against a discriminatory new pre-natal screening proposal.

Connie-Rose Seabourne was born two months premature and it wasn’t until she was two weeks old that parents Julie and Peter, of Daisy Hill Mews, Churwell, were told she had Down syndrome.

Connie Rose appeared on the protest poster.

Connie Rose appeared on the protest poster.

Yesterday, the two-year-old was one of the faces on posters at a campaign rally outside the Houses of Parliament asking Health Secretary Jeremy Hunt not to ‘screen them out.’

The ‘Don’t Screen Us Out’ campaign is calling for the Government to increase support for people with Down syndrome and their families and ensure the provision of balanced information for parents with a pregnancy diagnosis of Down’s syndrome.

Proud mum Julie said: “The rally is all about the new None Invasive Prenatal Testing that is now free on the NHS.

“Connie was on a massive poster raising positive awareness about Down syndrome as we’re wanting people to make informed choices before terminating a pregnancy.

Connie Rose with mum, Julie Britton.

Connie Rose with mum, Julie Britton.

“People need to know the joy of having a child with Down syndrome. Show Down syndrome as a positive and show that they are an integral part of our communities.

“Connie is known by everyone in Morley and everyone loves her. I can’t imagine my life without her.”

The rally included speeches from people with Down syndrome, parents and leaders from key Down’s syndrome advocacy groups.

The new technique called ‘cell-free DNA’ testing is being heralded as a move to reduce the number of miscarriages associated with invasive amniocentesis, with a National Screening Committee pilot study predicting that it would result in 25 fewer miscarriage per a year.

But Don’t Screen Us Out campaigners say proponents of the test have glossed over the fact that the same pilot study predicts the new screening will detect 102 more babies with Down’s syndrome every year. Based on the current 90% of pregnancies that are aborted following a diagnosis, this would mean an increase of 92 abortions for Down syndrome annually.

That reduction equates to an overall decline of Down syndrome live births by 13% and would lead to a corresponding reduction in the number of people with the condition in the UK. Such an outcome is likely to have a profoundly negative impact on the community of people with Down Syndrome.

Parents and campaign groups supporting the Don’t Screen Us Out campaign are urging members of the public to visit www.dontscreenusout.org and contact their MP asking them to take action to encourage Jeremy Hunt to reject the proposal.

Lynn Murray, UK lead for Saving Downs and spokeswoman for the www.dontscreenusout.org campaign, said: “We call on Jeremy Hunt to reject proposals to introduce these new tests. As a parent of a teenage daughter with Down syndrome, I’ve had 16 years of seeing the effects of screening on the lives of people with Down syndrome and their families. These new tests will make this situation worse, not better. The UK government should be putting its energy behind providing real support for our families and other parents who are expecting a child with Down syndrome.”

Christine Elliot, spokeswoman for the Down Syndrome Research Foundation, said: “As we celebrate the 10th WDSD around the world today we also face the biggest challenge for the existence of anyone who will ever be diagnosed with Down syndrome. The promise of innovation in the new NIPT test are nothing of the sort for unborn people with DS, it will be their certain demise in 9 out 10 pregnancies. Solely due to a diagnosis that is commonly delivered in an outdated and fear mongering manner. We call upon all people to reject this normalised discrimination that has been accepted without thought or question.”

Renate Lindeman, spokeswoman for Down Pride, said: “To many, my children and their cohort are examples of avoidable human suffering, as well as a financial burden. Knowing that individuals look at my daughters this way hurts, but seeing governments and medical professionals worldwide reinforce these prejudices by promoting selection is horrendous.”