Down’s syndrome test will bring ‘great loss to the world’

Parents of children with Down’s Syndrome fear the rollout of controversial Non-Invasive Prenatal Testing (NIPT) across NHS England will lead to more babies with the condition being aborted.

In a special report for ITV News, families in the Tyne Tees region shared their concerns about the impact of the scheme. The ‘evaluative rollout’ of the screening test, which began on 1 June, is expected to be completed by 1 July.

According to figures from Public Health England, more than 85 per cent of babies with a Down’s syndrome diagnosis are aborted.

Down’s ‘not devastating’

Speaking to ITV News Tyne Tees, Jo and Ray Tindle expressed shock at the way they were told that their daughter would be born with Down’s syndrome.

Jo explained: “The person who did give us the news said ‘We’ve found something devastating for baby. So instantly I thought my baby was going to die. That was the first thing that came into my head, not that she had Down’s syndrome. That’s not devastating”.

Jo also said: “It is really important we focus on the fact they are a child. The Down’s syndrome is secondary to the fact they are a child.

“When you have a baby anything can happen in that child’s life and as parents we manage, we adjust and we look after our children. People need to understand that is not scary. It may seem scary but you can get there.”

Stop screening out

Maggie Hart, who leads Together 21 – a support group in the North East which helps families living with Down’s syndrome – told the programme it was time to “stop screening out” babies with Down’s and start “accepting what we’ve got”.

Speaking of her own son, who was born with the condition in 2004, Maggie said: “Having Alex has changed my world, he has taught me so many things. His life is just as important as anyone else.

“The majority of our children at Together 21 go to mainstream education and a lot of our adults are seeking to live independently which has really changed over the past 17 years. There is a community of really nice friends who Alex loves to see.”

Legal situation

Campaign group Don’t Screen Us Out fears the introduction of NIPT will result in a “profound increase in the number of children with Down’s syndrome screened out” by abortion.

Spokeswoman Lynn Murray said: “We only see it going one way, and I think it’s a great loss to the world, and a great loss to people with Down’s syndrome, if this is the sort of the strategy we’re going to pursue.”

Currently, it is legal in all areas of the UK for unborn children with Down’s syndrome to be aborted up to birth.

Disability campaigners such as Heidi Crowter, who has the condition, say this is discriminatory and have called for the law to be amended. Her case challenging the law in Great Britain will be heard in the High Court on the 6 and 7 July this year.