World Down Syndrome Day: How two South Wales mums are 'changing the narrative' for future parents
Report by Kelsey Redmore
Two mums of Down Syndrome children are working to "change the narrative" after receiving what they described as a mixture between "a bereavement help booklet and washing machine user manual" when their children were born.
Laura and Louise each have a child who was diagnosed with Down Syndrome after birth and are working with health boards across south and west Wales to create special boxes for parents of children with Down Syndrome.
After sharing their experience of having children with Down Syndrome, they decided to launch 'Seren Dwt', meaning 'Dinky Stars', boxes.
The boxes will be distributed to parents across five Welsh health boards who have a baby born with Down Syndrome.
Laura says they'll contain "little information about Down Syndrome" but more signposting information about support groups and gifts for both the parent and the child.
They hope to change the narrative from one of "I'm sorry your baby has Down Syndrome" to "Congratulations on having a beautiful child".
The boxes are being launched on March 21, which is World Down Syndrome Day and both mums hope the boxes will "represent modern life of a child with Down Syndrome".
Laura said: "We wanted the boxes not to be overwhelmed with information about Down syndrome.
"It's just predominantly lovely things to celebrate the birth of a baby with some information just to sign post parents when they're ready, when they want to, to find more information rather than turning to Google, finding lots of outdated images and information.
"We want it to represent modern life with a child with Down Syndrome."
Louise's daughter Mya and Laura's son Arwel both have Down syndrome. They're hoping that their experiences of leaving hospital with their babies will be very different to the one they're hoping to create for parents today.
"We didn't know prenatally", Louise said.
"It wasn't something we ever sought to find out. And actually when Mya was born and we realised she had Down Syndrome, the staff were actually very good, very supportive, got all the tests, heart tests and blood tests done very quickly and we were out of hospital the next day. And that's where our kind of support stopped.
"We left hospital with a brown envelope, quite a scary corporate brown envelope with a big leaflet in it with a black and white picture of a very sad looking baby on the front with big letters 'Down Syndrome' and to be honest it was completely overwhelming.
"Apart from that, it was going out into the world with your baby and trying to find the information yourself."
These new boxes include support, information on who to contact and local groups they can meet up with, as well as a heartfelt letter from the mums themselves.
Louise added: "I think, leaving hospital was scary, leaving hospital, putting our baby in the car and going home thinking 'Wow, what's next?' and I think to have a bit of support straight away would have been really important at the time, you know, just knowing that all those experiences, what you're feeling, the emotions, because it is a rollercoaster.
"To be able to reach out to someone as soon as you're ready to and for them to turn around and say 'You know, that's how we felt as well'."
World Down Syndrome Day is a global awareness day which has been officially observed by the United Nations and the 2022 campaign asks people around the world what "inclusion" means for them.
The date being the 21st day of the third month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.
Around 41,700 people in the UK live with Down Syndrome but Laura believes that the "understanding" and "appreciation" towards them needs to start at birth.
She said: "There has been a massive shift in tolerance, understanding and appreciation of people with disabilities and differences, but that needs to come from the beginning.
"It needs to come from the moment this child is born, they are worth just as much as any other person that's been born."
The boxes have been launched today in a number of health boards across south and west Wales to mark World Down Syndrome Day but Louise and Laura are hoping the boxes will provide parents with year-round support and information from this day forward.