A group of mothers in Wales has created a ministry to support parents who receive a Down syndrome diagnosis, noting that the way the condition is talked about can make all the difference in how parents feel as they navigate the news.
Laura Howard, Lou Kennedy, and Laura Thomas have created the organization Seren Dwt, which means ‘little star’ in Welsh, to provide comfort and welcome boxes to new parents. Howard recounted feeling like it was “very much like a bereavement situation” after her young son received a Down syndrome diagnosis.
“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 told the BBC. “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.”
Kat Booker also felt surrounded by negativity following the diagnosis, saying doctors were biased toward abortion after informing her that her preborn daughter, Nancy, had the condition. “I felt like I was being pushed towards termination, because it was the easier thing to do,” Booker 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. “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.”
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Seren Dwt aims to use its welcome boxes to offer families like Booker the positive encouragement and information that is so often lacking with a Down syndrome diagnosis. “First we just wanted to congratulate them,” Kennedy told Wales Online last year, noting the organization hopes to remove the “bereavement” surrounding the diagnosis.
“It is just an extra chromosome. Our children are achieving what our other children are achieving, they are in mainstream schools. They may have had a few extra appointments and help along the way, but we wanted to show what it’s like to have Down’s syndrome in the 21st century.”
She told the BBC, “I wish I could go back and tell myself two hours after she was born, when we realized, 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 Howard, “People’s reactions, people’s tones, people’s words have such a massive impact.”
