Down’s syndrome: Mum felt pushed towards termination

A mum whose daughter has Down’s syndrome said she felt “pushed towards termination” during her pregnancy.

Kat Booker, 42, said information about her daughter Nancy’s condition was “very negative” and made her feel “horrendous”.

Charity group Seren Dwt said language used in pregnancy could have a “massive impact” on experience.

Antenatal Screening Wales said it was important information was offered in an “unbiased and non-judgemental way”.

Ms Booker, from Pontypridd, Rhondda Cynon Taf, said she felt she was being told what to do throughout her pregnancy, rather than being given information neutrally.

“I felt like I was being pushed towards termination, because it was the easier thing to do,” she said.

“I was just being told how difficult everything was going to be and all the things that Nancy quite possibly wouldn’t do, but not being given any other information as in there are children living quite happily with Down’s syndrome.”

She said Nancy, four, was a “dream” who “wears her out in the most fun way possible”.

Born using the Covid-19 pandemic, she remembered being alone at appointments, needing more support.

“I couldn’t really compute what was going on,” she said.

“It was only after I left, and I was thinking about it, I got really quite angry about the way that I’d been spoken to.”

Other mums of children with Down’s syndrome said they had similar experiences.

Laura Howard, mum to “cheeky and feisty” Tomos, four, said receiving his diagnosis after he was born felt “very much like a bereavement situation”.

“We had a nurse coming in and being quite upset, saying ‘oh, you’re too nice a people to have this happen to you’,” she said.

“It’s from good intentions that they’re trying to say that, but it is still creating this whole negative situation around what is just a baby first and foremost.”

Along with two other mums – Lou Kennedy and Laura Thomas – she set up Seren Dwt, a charitable organisation gifting Welcome Boxes to babies with Down’s syndrome across Wales.

“Having these boxes is saying there is a support group for you,” Ms Howard said.

“You are not alone, and your child will be alright, there’s lovely, positive things that they can achieve and there is a community ready and waiting with open arms for you.”

All three agreed language was incredibly important.

“I wish I could go back and tell myself two hours after she was born, when we realised, that you’re going to be OK and she’s going to be OK and life is not going to be doom and gloom,” said Ms Kennedy.

“People’s reactions, people’s tones, people’s words have such a massive impact,” added Ms Howard.

Sarah Fox, head of programme for Antenatal Screening Wales, agreed.

The organisation provides the policies, standards, and framework to enable maternity services across Wales to provide screening tests, usually ultrasounds or blood tests, for those who choose to have them.

She said their role was to ensure information was “robust” and “evidence-based”, offered in an unbiased and non-judgmental way.

“For example, we would use language like ‘probability’ or ‘chance’. We would not use the term ‘risk’.

“We would talk about ‘conditions’ not ‘diseases’,” she explained.

Ms Fox said they trained all student midwives around how to verbally offer screening tests, as well as providing written information in different formats.

It is just one part of the entire maternity care system, but she said she understood the need to listen to feedback.

“We are up for the challenge.

“We want to consistently improve and make better training and collaborate more closely with maternity services and with families to make sure that the training is fit for purpose, and the information is fit for purpose to enable that unbiased, informed choice.”

Gareth Thomas, a sociologist at Cardiff University University, has done extensive research with healthcare professionals, and written a book about the language around disability in pregnancy and antenatal care.

He said he wanted to see “why we’re so invested in screening and how it affects healthcare professionals, as well as expectant parents”.

He said it was simplistic and offensive to blame staff, when so many are “conscientious” and the “victims of various pressures, not least time”.

His research from 2017 found the term “risk” was being used in clinics, which might suggest how deeply ingrained that discourse around disability is, in systems and society.