'The law says my life's not worth living': The young woman fighting for babies with Down's syndrome

·5-min read

Watch: Woman to continue fight over Down's syndrome abortion law

Like any other young woman describing her husband, Heidi Crowter can’t help but be totally honest. 

"He can be a bit of a nightmare to live with," she laughs. "We can both be very stubborn. But I’ve always wanted to get married and it was the best day of my life. We live together in a flat in town and we are Christians so we go to Church together every Sunday. I love singing and dancing. I’m a big fan of X Factor."

Sitting next to her, her mother Liz smiles. "Heidi’s life is a whirlwind of joy and fun and she always lives in the moment," she says. "Watching her worship at church is one of the loveliest things to see. It might not be the most tuneful but she gives it her heart and soul.

"People come up to me in the street all the time and say: ‘Are you Heidi’s mum?’ because everyone likes her. Whenever anyone comes to our house and is maybe a little nervous, Heidi always puts them at ease. Our family life would not be the same without her."

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Don't Screen Us Out appeal at the High Court in London. (Supplied)
Don't Screen Us Out appeal at the High Court in London. (Supplied)

The fact that 26-year-old Heidi, from Coventry, and husband James both have Down’s syndrome has not prevented the couple from having a rewarding and happy life. Yet a current law in the UK states that babies found to have Down’s syndrome can be aborted right up to birth. It is a thought that horrifies Heidi and her family.

"The law says that a baby who doesn’t have Down’s syndrome can be aborted up to 24 weeks but a baby with Down’s syndrome can be aborted up to birth," says Heidi. "I know of people who have been told they can abort even as the baby is coming down the birth canal. That really upset me. 

"It’s like saying my life is not worth living and makes me feel of less value than anyone else. I look at my 10-year-old nephew (who doesn’t have Down’s) and then my husband James and think: ‘Why does the law protect my nephew but not my husband?’

It’s for this reason that Heidi is fighting to get the law overturned. She is taking a landmark case against the UK government over the current abortion law. She is being helped by the Don't Screen Us Out campaign.

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Heidi Crowter with her husband, James, on their wedding day. (Supplied)
Heidi Crowter with her husband, James, on their wedding day. (Supplied)
Heidi Crowter and her husband, James, pictured on holiday. (Supplied)
Heidi Crowter and her husband, James, pictured on holiday. (Supplied)

Alongside her is Máire Lea-Wilson – who was placed under pressure to have an abortion when a 34-week scan revealed her son Aiden had Down’s syndrome. Together, they have crowdfunded £121,000 for the case and, although the High Court rejected the challenge last week, Heidi plans to take it to the Court of Appeal.

"I was really upset not to win and it might take a year to get to the Court of Appeal but the fight is not over," she says. "The judges might not think it discriminates against me, the government might not think it discriminates against me but I am telling you that I do feel discriminated against… and the verdict doesn’t change how I and thousands in the Down’s syndrome community feel."

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Heidi Crowter, front right, photographed at her High Court appeal, with Don't Screen Us Out, in London. (Supplied)
Heidi Crowter, front right, photographed at her High Court appeal, with Don't Screen Us Out, in London. (Supplied)
Heidi Crowter is fighting to abolish a current UK law that states unborn babies with Down's syndrome came be aborted right up until birth. (Supplied)
Heidi Crowter is fighting to abolish a current UK law that states unborn babies with Down's syndrome came be aborted right up until birth. (Supplied)
Actor Sally Phillips and her son, who has Down's syndrome, attended the High Court appeal. (Supplied)
Actor Sally Phillips and her son, who has Down's syndrome, attended the High Court appeal. (Supplied)

Liz agrees wholeheartedly and says she is incredibly proud of her daughter. "I’m very thankful that when I had her, you only had the chance of a 12-week blood test – which we chose not to have – to detect Down’s syndrome and one scan," she says. 

"So we had a shock when she was born and we would have rejected a termination anyway but some of the pressure that is put on people now is ridiculous. Doctors are supposed to be non-directive but I’ve heard of people being offered a termination with the words: ‘Let’s just sort this out for you and you can get on with your lives,’ which is very upsetting."

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There were 3,083 disability-selective abortions in 2020 and 693 of these abortions were due to babies being diagnosed with Down’s syndrome, an increase of 5.64% from 656 in 2019. 

Liz says: "There’s so much misunderstanding about Down’s syndrome and that harks back to the stereotype from decades ago when it was thought that children with Down’s syndrome couldn’t go to school or that they would have very short lives. Even doctors would say there is no point treating them because what’s the point? 

"But things have moved on. Surgery has moved on and you only have to look at Heidi and James to see what a difference they can make. We work with the charity Positive About Down’s Syndrome to help teach midwives and doctors the best way to break the news about a diagnosis. 

"We feel that if people are given the best up-to-date information, then they can make a more informed decision. It might take another year to get to the Court of Appeal but Heidi is very determined. She wanted to be involved in the campaign as soon as she understood what it was about."

Heidi agrees. "This fight is not over," she says. "I’m doing this for all the babies who need a chance."

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