BBCA mother whose daughter has Down syndrome said she felt “forced into an abortion” during her pregnancy.
Kat Booker, 42, said the information about her daughter Nancy’s condition was “very negative” and made her feel “horrible”.
The charity’s Seren Dutt said the language used during pregnancy can have a “huge impact” on the experience.
Prenatal Screening Wales said it was important that important information was provided in an “unbiased and non-judgmental manner”.
Ms Booker, from Pontypridd, Rhondda, said she felt she was being told what to do during her pregnancy rather than being given neutral information.
“I felt like I was being pushed toward getting fired because it would have been easier,” she said.
“I was just made aware of how difficult everything is and all the things that Nancy probably wouldn’t do, other than that there are children living happily with Down syndrome. No information was given.”
She said four-year-old Nancy was a “dream” that would “tire her out in the most enjoyable way possible”.
Born during the COVID-19 pandemic, she recalled being alone at appointments and needing more support.
“I had no idea what was going on,” she said.
“It was after I left, and I was thinking about it, and I was really pretty upset about the way I was talked about.”
Other mothers of children with Down syndrome said they had similar experiences.
Laura Howard, mother of four-year-old “sassy and energetic” Tomos, said it was a “bereavement-like situation” when she was diagnosed after his birth.
“The nurse came in and was very upset and said, ‘Oh, you’re such sweet people, I can’t believe this is happening,'” she said.
“They mean well when they say that, but this whole negative situation is still being created around something that is first and foremost just a baby.”
Along with two other mothers, Lou Kennedy and Laura Thomas, she set up Seren Doubt, a charity that gives welcome boxes to babies with Down syndrome across Wales.
“Having these boxes means you have a group to support you,” Howard said.
“You are not alone. Your child will be okay. There are beautiful, positive things they can accomplish. And there is a community ready and waiting for you with open arms.”
All three agreed upon languages were of great importance.
“I wish I could have come back to myself two hours after she was born and said to myself, when we realized that you and she were going to be okay, and that life wasn’t going to be all hopeless and dark,” Kennedy said. said. .
“People’s reactions, people’s tone, people’s words have a huge impact,” Howard added.
Sarah Fox, head of the Wales Prenatal Testing Program, agreed.
The organization provides the policies, standards and framework that enable maternity services across Wales to offer screening tests (usually ultrasounds or blood tests) to those who request them.
He said their role was to ensure that information was “robust”, “evidence-based” and provided in an unbiased manner.
“For example, we use words like “probability” and “chance.” We don’t use the word “risk.”
“We talk about ‘conditions’ rather than ‘diseases,'” she explained.
Ms Fox said all student midwives were trained on how to suggest screening tests verbally and how to provide written information in various formats.
Although this is just one part of the overall maternity care system, she said she understands the need to listen to feedback.
“We are up for the challenge.
“We are continually improving our training to make it better and working more closely with maternity services and families to ensure that training is fit for purpose and that information is fit for purpose. We want to make sure that you have the best experience possible so you can make a fair and informed choice.”
Gareth Thomas, a sociologist at Cardiff University, has conducted extensive research with medical professionals and written a book on the language of disability in pregnancy and antenatal care.
He said he wanted to know “why we are investing so much in testing and what impact it will have on health care workers and expectant parents.”
He said blaming staff was short-sighted and offensive when so many were “good” and “victims of time and other pressures”.
His 2017 research found that the term “risk” was used in clinics, which may indicate how deeply ingrained disability discourse is in institutions and society. be.
