‘I EXPECT HIM TO BE TREATED LIKE ANY OTHER CHILD’
Mum shares joy of having a son with Down’s syndrome
MUM SHARES JOY OF HAVING A SON WITH DOWN’S SYNDROME:
GWILYM Birkett is four. He likes Mr Tumble, ice cream and going to nursery. He understands English and German. He also has Down’s syndrome.
When his mother Kristin was told at 34 weeks’ pregnant that the baby she was expecting had the condition, she admits she and husband John “considered all of the options”.
“We felt our world had fallen apart. It was the worst feeling. I had never felt so low in my entire life. It was dreadful.”
The couple from St Bride’s Major in the Vale of Glamorgan knew little about Down’s syndrome but decided to find out more.
They quickly realised there was no decision to make. This was their baby, and they were keeping him.
Asking for details about the options, Kristin said she felt she could not live with having a termination so late in pregnancy, even though that is permitted on medical grounds.
As Gwilym approaches his fifth birthday and is set to start school later this year, Kristin says she is “mortified” by how she felt before he was born at the Princess of Wales Hospital in Bridgend.
Over the past four years, the former NHS medical photographer has documented Gwilym’s life in beautiful pictures and on Facebook alongside his older sister Klara, six, and younger twin sisters Frieda and Flora, two.
Kristin says there is more awareness about Down’s syndrome now than when she had Gwilym, but she wants to share her story to show what it’s been like to raise her little boy.
“He’s like any other child to me,” she said. “Looking back to when we had the diagnosis I am mortified about the way I felt. I can’t believe the way I felt then.
“Children with Down’s syndrome are so capable, but you have to fight for awareness and make people realise they are like any other child, they just take a little longer to do things.
“I expect him to be treated like any other child, except for medical reasons.”
Gwilym was born with a hole in his heart, but that mended on its own, and he also had glue ear, which affected his hearing. Grommets fitted just before lockdown have helped that.
Like other children with Down’s syndrome, the little boy’s muscle tone can be low. Before lockdown his parents took him to riding and swimming lessons every week, as well as to the gym.
Since last September he has been going to nursery at St Bride’s Major Primary for two-anda-half hours a day with one-to-one help and a statement of special educational needs.
Gwilym has been slower to speak than his peers. He uses Makaton, a language programme that uses symbols, signs and speech. He also understands English and his mother’s native German.
Kristin, who came to Wales from Germany in 2003, hopes he will soon enjoy learning Welsh when he starts school.
“We want to keep him in mainstream school at this point, but maybe later on that might change,” she said.
“His one-to-one helper is amazing, and goes above and beyond. Gwilym loves school and socialising with his friends.
“We want him to learn academic skills, but I am realistic. I want to push him and treat him like any other child. He does not get away with things!
“Having Gwilym has made me more aware of health and healthy eating. Some children with Down’s syndrome have narrower airways and ear canals, and some can have gut issues. Diet is very important.”
Like other four-yearolds, Gwilym wants to get on with life and do things by himself.
Kristin said: “Gwilym loves to be independent and you have to give him a chance to be. He doesn’t like to be babied. He just wants to do everything himself.
“He is a very good big brother and likes to say what is right and wrong.
“Gwilym is a total boy. When he gets hungry he is grumpy and he bosses his younger sisters around. He is also very thoughtful too. If he sees me washing my hands he goes to get the towel.”
Kristin said she understands the worry parents may feel if, like herself at the time, they know nothing about Down’s syndrome and their baby has just been given a diagnosis.
She said parents who find out they are expecting a baby with Down’s may opt for termination without having all of the facts.
“I would say enjoy your pregnancy. At the end of it you will have a baby, not a monster, a beautiful baby, who will make you grow so much.
“We did consider every option when we had the diagnosis.
“I am a strong believer in things happening for a reason, and I am a different person now, for sure.
“Having Gwilym showed me you can’t take things for granted and you see how things in life are unfair.
“The girls just started to walk and talk on their own. Everything Gwilym does he works so hard for, but gets so much less appreciation for.
“For us everything is a milestone, but other people don’t know how hard it is for him. Gwilym works so much harder than other children to reach milestones.
“He is our little boy.”