DISCOVERING the longed-for baby she was carrying would be born with Down’s Syndrome was a bolt from the blue for Linzi Graham.
Already mum to two healthy children, she had no experience of disability and immediately booked in for a termination.
But on the eve of her planned termination at 21 weeks, she had a change of heart, and daughter Matilda Patterson was born in July 2019.
Linzi, 30, from Belfast, said: “I was 18 weeks pregnant when I discovered the baby had the condition and I felt completely overwhelmed.
“All I had in my mind was misinformation, fear and negativity, but Ican’t explain how glad I am that I changed my mind.
"The reality of life with a child with Down’s Syndrome in 2020 is completely different from what I feared it was.”
Which is why hearing Emmerdale’s storyline about two of its characters, Laurel Thomas, played by Charlotte Bellamy, and her onscreen partner Jai Sharma, Chris Bisson, opting to terminate a pregnancy after getting an prenatal diagnosis of Down’s Syndrome, came as such a blow.
“I was incredibly upset,” says Linzi. “It brought me back to when I was in that position.
"I worry if this had been going on then I might have seen a termination as the only sensible choice, and my beautiful baby might not be here now.”
Emmerdale has come under fire over the controversial plot, with thousands of people signing an online petition calling for the story line to be dropped after it first aired earlier this month.
Nicola Enoch from parents’ support website Positive About Down Syndrome described the storyline as “deeply insensitive and offensive”.
She said: “As a society we need to be looking at how and why so many expectant parents terminate, and we know from our own personal experiences and that of thousands of other women that there is a huge amount of ignorance and fear around Down’s Syndrome.
“Emmerdale is perpetuating this ignorance and fear when instead it should be highlighting the desperate need for expectant parents to be better supported and informed.”
Actress Charlotte Bellamy defended the storyline on ITV’s Lorraine, saying: "It's a highly emotive subject and I think it's important to say Emmerdale aren't making judgements, they aren't taking sides."
A spokesperson for the programme said fans will know characters Rhona and Marlon’s much-loved son, Leo, who has Down’s Syndrome, has starred in the soap for years, adding: “Emmerdale made the conscious editorial decision to portray this storyline to reflect what happens to thousands of couples throughout the UK who make the painful decision each year to terminate their pregnancy after a prenatal diagnosis.
“Before the filming of Laurel and Jai's story, the programme consulted widely with many individuals and organisations.
"These included parents with children who have Down's syndrome, medical professionals involved in this field and groups such as Antenatal Results and Choices.”
But with around 90 per cent of people in the UK who know their child will be born with Down’s Syndrome going on to have an abortion, Linzi and other families whose loved ones have the condition were left dismayed.
'I booked termination because I was afraid of having a baby with Down's Syndrome – I'm glad I changed my mind'
Linzi, also mum to daughter Morgan, 13, and 12-year-old son Corey, says that she was shocked when doctors said her unborn baby had Down's Syndrome.
She believed she had no other option than to end the pregnancy and booked in for a termination two weeks later.
“In Northern Ireland it was still illegal to have an abortion at the time, so I booked to come to England,” she said.
“But in the weeks in between I researched online, and saw amazing families going through what I was so afraid of.”
In the end, after a heart to heart, hospitality worker Linzi and partner Keith Patterson changed their minds.
“Speaking to other parents made a big difference,” she says. “I realised I was only having a termination because I was afraid, and that the more information I had, the better.
“I know everyone has different circumstances and some women feel they won’t cope with a child with disabilities. I felt that myself at one point.
“But I’m glad I didn’t go through with it. Matilda is amazing. After a tough start with heart surgery at 13 days old, we’ve been able to enjoy a normal life.
“My other kids don’t see her as anything other than their little sister. She’s been able to do so much more than we thought.
"She loves swimming, she models for a local boutique and the plan is for her to go to mainstream school.
“It’s that sort of message, the joyful reality of life with a child with Down’s Syndrome, that I’d like people to hear when they’re facing this choice. Not negativity.”
She added: "For me, the point isn’t a debate about whether abortion is acceptable or not.
“I understand the complexity and I know some women and families will feel that’s their only option. I’m not judging their choice.
“What’s upsetting is that Emmerdale is choosing to use their platform to represent the mainstream choice, the people who opt for a termination.
"I know it’s an incredibly hard decision for parents to make, but it’s the 10 per cent who choose to go on and have their children who are left behind.”
'At scan my doc told me they were sorry and funeral was free after discovering baby has Down's Syndrome'
Community carer, Naomi Hughes is 30 weeks pregnant and has been told her baby will be born with Down’s Syndrome.
Already mum to Felicity, 14, and eight-year-old Tayah, Naomi is a single mum and says she cried when she heard about the Emmerdale plot.
“I cried because I thought, this is going to affect so many people who have just received a prenatal diagnosis,” she says. “I worry they’ll think, ‘OK, this is what you do, you terminate’.
“Especially when you look at the characters involved. Laurel and Jai are quite well off, they have money.
"I’m a single mum and money isn’t a luxury I have. I worry there will be mums looking at this thinking, ‘If couples like them can’t do it, then neither can I’.”
Naomi, 32, was 12 weeks pregnant when she discovered her baby was 99 per cent likely to have Down’s Syndrome.
“I was driving when I got the call,” recalls Naomi, from Stroud. “The person said ‘I’m sorry’ the results show the baby has Down’s Syndrome.
“Those words, ‘I’m sorry’, made me panic. They made me think, it must be awful if they’re saying sorry.”
During a hospital appointment soon after, Naomi says she was told a termination could be booked on her behalf – and reassured the funeral would be free.
“It was horrendous,” she says. “My mum was with me and they told me the funeral home would come and collect the baby for free.”
But rather than opting for a termination, Naomi carried on with her pregnancy and has sought support online.
“The people I’ve found have been so reassuring,” she says. “I’m not naive though.
"I understand there could be many challenges ahead, but no one knows how their children’s lives will pan out.
“I found out at my 20 week scan the baby has a heart condition, and since then I’m in touch with parents in the same situation. My eyes are open.”
And while she has made the decision to keep her baby, due in January, Naomi understands why that isn’t the right choice for everyone.
“I get it,” she says. “But the more I learn, I realise Down’s Syndrome isn’t a life sentence.
"People need all the information they can get – because once you make that call, you can’t take it back.
“The issue I have with Emmerdale is that they could have used this opportunity for something else, for a condition that is genuinely not compatible with life.
"These things exist and could have highlighted the struggle to make the decision to terminate a wanted pregnancy.”
'I didn't want a baby with Down's Syndrome – but I didn't want to terminate'
Primary school teacher Hannah Williams and her husband David had their second son Brody six months ago.
“He was 11 weeks early, which was stressful during lockdown,” says Hannah, from Newport. “But he’s an amazing baby.”
Already parents to five-year-old Zac, Hannah and David, 34, discovered Brody was likely to be born with Down’s Syndrome four months into the pregnancy.
“The initial test was non-invasive, and we were told it was between 95 per cent and 99 per cent accurate,” says Hannah, 34.
“When I found out I was really upset. If I’m honest, I didn’t want a baby with Down’s Syndrome.
"I didn’t know anything about it, but I also didn’t want a termination.
"Then, even though we were so close to being sure, I was offered an amniocentesis but I said no because there was a potential risk of miscarriage.
“By that time he was already kicking and we’d told Zac he was getting a little brother. There was no way we’d risk losing him.”
And as Hannah got her head around her baby’s condition, warnings about potential health problems emerged throughout her pregnancy.
“We were told Brody had a hole in his heart and that he’d need open heart surgery,” she says. “But the hole closed on its own.
“We were told he’d struggle with feeding and that there was potential for brain damage. But at six months, he’s doing great and he’s been discharged from neurology.
“Everything we heard was negative, and once we made the decision to keep our baby we felt we didn’t get any support.
"We thought we wouldn’t have a normal life, that he’d be really sick and that it would put a strain on our marriage – but that couldn’t be further from the truth.”
And with Emmerdale’s storyline in the headlines, Hannah worries about the impact it could have on what she says is an already negative stigma surrounding the condition.
“It’s not about being against any woman’s right to choose,” she says.
“Everyone’s circumstances are different, and it’s a devastating choice to make.
“But parents like me want people to know Down’s Syndrome is not this awful thing.
"I hope the message they’re sending isn’t that caring for a child with Down’s Syndrome is terrifying.
“For so many families, like mine, that stigma is simply not true. I hope they share positive information and not just an unrealistic, bleak picture.”
'I’d always thought it was older women who had children with Down’s Syndrome'
Lucy Monnoyer, 30, is a photographer from Rainham, Essex, and her daughter Polly Blossom has Down’s Syndrome.
“My fiancé Dominic Beackon and I had tried for a few months before finding out I was pregnant,” she said.
“We were over the moon, and at the 12-week scan they said the baby was showing markers for Down’s Syndrome.
“We were knocked for six. I was only 27 at the time, and I’d always thought it was older women who had children with Down’s Syndrome.”
After further tests, the news was confirmed when Lucy was 15 weeks pregnant.
“They said ‘I’m so sorry’, and it was just an awful thing to hear,” she says. “It was so negative, and the person who rang said ‘I have really bad news for you’.
“The way the condition is framed is all wrong because since Polly Blossom arrived she’s been an absolute champ.”
During the early months of her life, Polly, now 21 months, needed open heart surgery and her parents have been told she could need more in the future.
“She blows my mind with everything she’s dealt with,” says Lucy. “But you don’t know what any child is going to encounter through their lives.
"She might need more surgery 10 years from now, or she might never need it.
“When doctors at the start said they’d discuss my ‘options’ I knew that meant termination, but it was never going to happen. This was my baby, and there was no way I’d give up on her.
“She’s amazing. She’s like any other toddler. She’s wild and fun and crazy and caring. She loves dancing and she started recently at mainstream nursery. She’s keeping up with the other kids.”
It’s the the reality of life with her daughter that makes Lucy concerned about the soap’s upcoming plot.
“I was shocked when I heard about it,” she says. “I thought of all those people at home watching who could be facing this situation months down the line.
“They might see it and think a termination – which is what most people do anyway – is the obvious and right thing to do.
"This endless negativity about Down’s Syndrome is the last thing people need, because life with a child like Polly Blossom is amazing.”
Find out more at www.postiveaboutdownsyndrome.co.uk and downs-syndrome.org.uk
‘I terminated pregnancy after Down Syndrome diagnosis’
One woman, who was supported by Antenatal Results & Choices (ARC) – the charity which advised Emmerdale on the storyline, has spoken anonymously about why she decided to go through with a termination.
She said: “Four years ago I terminated a pregnancy following a Down Syndrome diagnosis. The thing that upsets me about this discussion is that people who have either made a different choice or had no choice, speak to why I made this decision and often say it must be from ignorance or because we were influenced to do so by an uncaring medical team. I find this incredibly upsetting.
“Going through this experience was the single worst thing of my life. The idea that I might make this decision without thought, detailed research or before fully educating ourselves on the all the possible outcomes is quite simply offensive. “The idea that I didn't love my child or didn't accept them is offensive. The doctors and nurses who supported us where incredibly supportive, non- directive and allowed us plenty of time to fully and carefully consider all our choices.
“The point is when this happened I did not tell a single other person apart from very close family. I went through the whole experience alone and with no emotional support to cope with the feelings of grief because I was terrified what others would think.
“For a long time after I thought I was the only one who had gone through this. If this Emmerdale storyline tells OUR story too then that is a good thing. We deserve a voice too. I hope this allows other women to be able to talk about their experience and for others to understand the reality not the assumptions.”
Jane Fisher, from ARC, said: “The subject of termination is emotive and the debate around this storyline has become very heated. This means women and couples who have ended their pregnancy do not feel able to speak out publicly.
“I hope Emmerdale covering this will help break the silence and enable others to tell their story if they wish. It is a deeply personal and private experience, but should not be viewed as a shameful secret.
“This is not about right and wrong but about people making their own decisions. Whatever choice parents make, they deserve support and empathy, not judgement.”
For more information from ARC visit www.arc-uk.org
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