‘I was treated like I had lost my child after diagnosis of Down’s syndrome’
Lou Kennedy has joined forces with other mums with Down’s syndrome children to strike a very different tone and talk about how their little ones can do everything their siblings and peers can. Health editor Lydia Stephens reports
TWO mothers to children with Down’s syndrome are on a mission to change perceptions after describing how they were treated as if they were going through a bereavement when they received their respective babies’ diagnoses.
Laura Thomas and Lou Kennedy are both parents to children with Down’s syndrome.
They were both given the diagnosis following the births of their children Arwel (Laura’s son) and Mya (Lou’s daughter), and both struggled with the overwhelming feelings that came with it.
The Cardiff mums said they had amazing experiences with their hospital care, but that they were both left feeling as though the information they were given was treating the diagnosis as a “bereavement”, and they were left to turn to Google to find help and advice, which wasn’t always accurate.
Discussing the birth of Mya, who is now five, Lou said: “I spotted that Mya had some features when she came out, and I said to the midwife that I thought she had Down’s syndrome, and she agreed. The staff were really supportive, they were really amazing. We were sent home from the hospital with a leaflet that looked like a bereavement leaflet. There was a picture of a baby on the front in black and white.
“When my daughter was three I showed her and she said, ‘That baby looks sad.’ There was lots of information in it but there was a lot of what your child will not be able to do. It was not, ‘Congratulations you have had a baby.’”
Laura added that her experience was similar, and that she took to Google to find information when Arwel, now aged four, was born. She said: “Google was the worst thing you can do, there is a lot of outdated advice. Most babies born with Down’s syndrome are diagnosed after birth. You have just had a baby and you are full of hormones and it is a lot to get your head around. A lot of us have never come across a person with Down’s syndrome before. It can be quite overwhelming at that point. So we wanted to set something up that we would have appreciated.”
Laura and Lou launched Seren Dwt baby boxes on World Down Syndrome day last year. They have given out 30 boxes across Wales in the last year, and provide them to all birthing hospitals across the
country.
“First we just wanted to congratulate them,” Laura said, adding that they wanted to remove that sentiment of bereavement upon diagnosis that they experienced. “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.”
Laura said Arwel loved swimming lessons and gymnastics. Lou added that Mya was also a keen swimmer, and had just got her first belt in kickboxing.
The Seren Dwt (which means little star in Welsh) boxes include a range of items for parents and their new babies. There are keepsakes, treats for baby and parents, as well as useful information leaflets and a book called Nobody Told me the Truth About Down’s Syndrome
Seren Dwt is run by Laura, Lou and another mum, Laura Howard, whose little boy, Tomos, also has Down’s syndrome. They also run support groups across Cardiff and south Wales, as well as a Facebook group for parents to get together and seek support.
“We meet up with the children, because as much as we want them to have a diverse group of friends they will also want to be friends with children who are just like them,” Laura explained.
The mums are participating in a 10k walk “under the stars” on Tuesday night, which is World Down Syndrome Day.
They are starting off at the University Hospital of Wales before making their way into town, past City Hall and down towards Cardiff Bay and the Millenium Centre – both buildings will be lit up in blue and yellow, the colours to mark the day.
Mum Kimberley was one of the first in Wales to receive a Seren Dwt box when her daughter, Bella, was born.
She said: “Receiving the Seren Dwt box meant so much to me. It was a massive congratulations from people who I felt an instant connection with.
“All my pregnancy I was left to research and fend for myself and my baby.
“Now I have a group I can go to for advice, support, and celebrate the small milestones that our babies reach, and social meet-ups where us Mammies can share stories and feel we are not alone.
“The kind box and the group is just amazing.”