Newport Caerphilly families on Down's syndrome court case

Ms Smith, from Rhiwderin, is one of the Gwent families we spoke to who are backing the campaign which was heard in the High Court last month.

Bec Smith and her family.

Tom and Bec Smith and their daughters Millie and Polly

The case was brought to the court by 26-year-old Heidi Crowter from Coventry, a married woman who has Down’s syndrome, and Maire Lea-Wilson, 33 from West London, whose son Aidan has the condition.

They are fighting for a change to abortion law in England, Wales and Scotland.

Under current law, abortion is permitted up to the 24th week of pregnancy - unless there is a “substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”, which includes Down’s syndrome.

However, in cases where this does apply, abortion is legally allowed right up until birth - which some say is discriminatory against those with Down's syndrome or other conditions, and treats them as less than human. 

Mrs Crowter said: “I am someone who has Down’s syndrome and I find it extremely offensive that a law doesn’t respect my life, and I won’t stand for it.

“I want to change the law and I want to challenge people’s perception of Down’s syndrome. I want them to look at me and say ‘this is just a normal person’.”

“That’s what this is about. It’s about telling people that we’re just humans with feelings.”

Asked whether women should still have the choice to have an abortion, Ms Crowter said: “That’s not what the case is about, but I do respect their choice.

“I just want them to get the right information, and just meet someone who has Down’s syndrome.”

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What is Down's syndrome?

• Down's syndrome is when a baby is born with an extra chromosome.
• People with the condition will have some level of learning disability. While some need regular care and support, others are able to be more independent, including getting jobs and living independently.
• Mothers-to-be are offered screenings to determine the likelihood that their child will have Down’s syndrome, usually at either 11 or 14 weeks.
• It generally does not run in families, although the chances of having a baby with the condition increases the older the mother is.
• Many children are able to go to mainstream schools, although educational support is available.
• People with Down's syndrome need regular check-ups with a GP as they are at greater risk of developing conditions such as Autism, Alzheimer's, and dementia, as well as heart, vision and hearing issues. They are also at greater risk from infections such as pneumonia or flu.

Each of the families the Argus spoke to said, while there are challenges to raising a child with the condition, their loved ones were no less valuable, kind or loving as someone who does not have Down's syndrome.

All believed in abortion being the expectant mum’s choice but felt there should not be a difference in rules for parents expecting ‘healthy’ babies and another for those with conditions.

They also believe that the way the news is given to expectant parents should be changed, with many health professionals using terms such as “I’m sorry”, which the parents believe automatically sets up the prejudice that Down's syndrome is a very bad condition and someone with it will have no quality of life.

Ms Smith gave birth to Polly right before the first Covid-19 lockdown. She did not have a pre-natal diagnosis and was told that it was a ‘low risk’ of Polly having Down’s syndrome when the test was done at the 12-week scan – a wording Ms Smith says should not be used as it backed up negative beliefs.

Polly

Bec Smith's daughter Polly

“All we wanted to find out was if anything did come back, it was for us to be prepared," she said. "We decided we were never going to terminate and just wanted to prepare ourselves.”

Polly arrived just over a week early and Ms Smith was told she could go home 12 hours later.

“I had noticed she was a little more laid back, but we only had our older daughter to compare her to," she said. "She was very sleepy and I had noticed her puffy eyes.

“A midwife came to look at her because she hadn’t opened her bowels. I am a community nurse for children and said it was okay. The doctor took us to a private room and went through a thorough examination and said 'I’m really sorry, it looks like your daughter has got Down’s'.

“I was shocked and said ‘I’m a mum and I didn’t know.’”

Ms Smith said her experience with the doctor was positive, however not much information was given.

“He spoke about Polly like she was a little girl and was really in tune. But we were given little information and just left to it," she said.

“We had no idea who to contact about what.”

Ms Smith said Polly, now aged 16 months, is thriving and doing most things her older sister could at her age.

“She can pull herself up onto the sofa," she said. "She can feed herself and give herself a drink. She is meeting all the milestones.”

On the law, Ms Smith said: “I have two daughters who I love and value equally. I think the law does not value them equally and that upsets many people.”

Jasmine Corner from Newport was told multiple times that she could have an abortion despite being over the 24-week limit when she found out her baby boy had Down’s syndrome.

“We were shocked when we were offered an abortion," she said. "I asked if it was legal because it was past the 24-week limit, and they said it was in this situation. Even after saying no, we were offered an abortion many more times.”

“We got to the 20-week scan, and all was fine and we were told we were having a baby boy who was healthy. At 23-weeks I had a small bleed, and it was because I had a rare blood type.

"At the scan to make sure everything was okay, they noticed something wrong with the baby’s bowel so we had scans every two weeks and were told he had a bowel condition on 30 weeks.”

She was also told that there was a one in three chance of the baby having Down’s syndrome.

Jazmine Corner and her family

Jazmine Corner from Newport with husband Ben and sons Lucas and Jake

Ms Corner agreed to have the test to see if the baby did have the condition but both she and her partner had already decided that whatever the outcome, they were going to keep the baby.

“We had the test just for our own knowledge so we could prepare," she said.

“Two days after the test we had a call and the nurse said ‘I’m really sorry, your child has Down’s syndrome'. She said we can arrange a termination for the Monday.

“We were shocked to hear that our child has a condition we have never experienced and we are processing that, and in the same call to hear the people you expect to help you are basically saying to give up on your baby now.

“It is so ridiculous, it's bordering on murder.”

Lucas was born eight days later and Ms Corner said that in those eight days, she was offered a termination six more times. Lucas was born four weeks early but, at six pounds, was a healthy weight.

After a short stay in hospital, he came out of hospital on the Christmas Eve and is now six years old.

“We don’t know what we would do without him,” said Ms Corner. “He’s just like any other child. He goes to mainstream school and is moving into year two. He was not too far behind his peers in terms of development. We were told he would never walk or talk but he is walking.

Lucas

Jazmine Corner's son Lucas

“They don’t tell you this. They tell you all the things your child will not be able to do but they don’t tell you that they could do them or what they will be able to do.

“This is all based on a law set 60 years ago, we have become more accepting as a society and we need to change this law.”

Kelly Love from Blackwood is a social care worker who has worked with a number of people with Down’s syndrome on varying stages of the spectrum. Her uncle Anthony Williams is 43 and has Down’s syndrome.

“When Anthony was born they would not diagnose until about six weeks old and his mum was told she may as well put him into a home now because he would be a vegetable,” said Ms Love.

“My mum helped bring him up because of the way it affected their mum. It ended up being a completely different scenario. Anthony will need some form of care for the rest of his life but he currently works in a café and a charity shop.

Anthony Williams

Anthony Williams from Blackwood

“He has such a warm heart and is so caring.

“I work in social care and have looked after and worked with many people with Down’s. There is a real spectrum of Down’s, just like Autism, and having it does not mean that you are going to be severely handicapped.

“The law is very damaging. Every woman has a choice, but it should be a fair choice.”

Edwina Bailey’s daughter Leah is 22 and has Down’s syndrome. Ms Bailey found out that her daughter had the condition after birth and said that the hospital staff told the Newport mum she could leave her new baby at the hospital and go home and try again.

“Leah was born at home and taken into hospital,” said Ms Bailey. “She was unwell and had to wait seven days for a diagnosis. I was never given any information about Down’s syndrome. One of the options I was given was to leave her there and go home and try again.

“I had a birth diagnosis so didn’t know beforehand.”

Edwina Bailey and daughter Leah

Edwina Bailey and daughter Leah

Ms Bailey strongly believes the wording the doctors and nurses use needs to change.

“We’re campaigning to tell it right, for doctors to review the negative language they use when delivering the news," she said. "They use words like ‘I have some bad news’ and assume you will have an abortion. Post-natal diagnosis is not as bad as pre-natal because with pre-natal, there is pressure at every appointment.

“They tell you how unfair it will be on your other children, how it can break up your marriage, how you will have to give up your life. If they told both sides of the story, it would be less shocking and less distressing for the parents.

“I wasn’t expecting a baby with Down’s and it was a massive shock but I wasted time because of the doom and gloom and the bleak future they painted for us. I wasted time being sad, worried and angry. I regret that because it should have been a lovely time and I regret not knowing what I now know because she is the best thing that happened to me.

“She enriches the lives of everyone in our life. She has a wicked sense of humour. She will need care. It is difficult at times, like with any form of parenting, but it is not as bleak as it is made out to be.”

On the abortion law, Ms Bailey said: “They push right up to when the baby is in the birth canal for an abortion. It’s just wrong. Why is it okay for a baby to be terminated right before birth because it will have a condition?”

The High Court’s decision on the law is expected in the autumn.