‘If I could change anything, I would want there to be better services’

‘If I could change anything, I would want there to be better services’

By Éadaoin Ní Flaithearta

A MOTHER of a two-year-old child with Down syndrome has spoken about her little girl’s health struggles and the positive impact she’s had on her family, ahead of World Down Syndrome Day (March 21).

Sarah King, from Jobstown in Tallaght, said that when her daughter Frankie was born, she and her partner, Will Treacy, became “different people” and now appreciate the little things in life.

Sarah and Frankie 01 1

Frankie with mam Sarah

When Sarah was pregnant with Frankie – her third child after Liam, five, and Mia, four – she and Will received the news that their unborn child had a foetal abnormality when they attended the 14-week scan. Eight weeks later, it was confirmed that their baby had a chromosomal disorder.

“They said that there was a chromosomal disorder,” remembered Sarah. “I asked what that meant, and they said it was Down syndrome.

“We said that was grand, because we had been around people with Down syndrome before. But we had no idea about the health complications they could have.”

According to the HSE, approximately 40 to 50 per cent of children with Down syndrome have a congenital heart defect, and 60 per cent of them will require treatment in hospital.

When little Frankie Treacy was born in September 2018, she was diagnosed with atrioventricular septal defect (AVSP), which meant she had holes between the chambers of the left and right side of her heart. She underwent open heart surgery in Crumlin Children’s Hospital at five-months-old.

“She had a big hole in the middle of her heart,” explained Sarah. “Frankie couldn’t regulate her body temperature, and she started failing to thrive – she couldn’t eat, she was losing weight, she couldn’t stop sweating. The doctor said she’d gone into heart failure.”

Sarah and Frankie 03 1

arah with her niece Bella and her children Liam, Frankie and Mia

Surgeons in Our Lady’s Children’s Hospital successfully carried out open heart surgery on Frankie, and she remained in hospital for ten weeks afterwards.

“I was so naive about the health challenges for people with Down syndrome,” admitted Sarah. “Anyone I ever met with Down syndrome had a heart defect, but they didn’t need surgery.

“I had no idea about the different medical challenges, and it was touch-and-go for a while there with Frankie.”

Now a thriving little girl, Frankie was merrily giggling and laughing while Sarah was on the phone with The Echo, and Sarah shared how her other children were relieved when Frankie came back from hospital.

“I’ll never forget, that about a week after we got back from the hospital, we were all sitting watching telly and Liam said, ‘Isn’t it great that we’re all together?’

“Myself and Will had been taking turns going to the hospital, so one of us was always out of the house. But Mia and Liam were great about it all.”

While Sarah praised the work of the doctors and staff in Crumlin who treated Frankie’s heart condition, she said that more needs to be done to help parents of children with Down syndrome.

“We had no support after the heart defect was fixed,” she said. “I wouldn’t change a thing about Frankie – if I could change anything, I would want there to be better services, support and medical care for people with Down syndrome.”

Sarah linked in with Down Syndrome Ireland, a charity that provides support and services to people with Down syndrome and their families, and before the pandemic she regularly attended one of their playgroups with Frankie.

Down Syndrome Ireland is asking people to run, walk or wheelchair their own Purple Run (5km or more) anytime during the run up to World Down Syndrome Day on Sunday, March 21, and raise money to help to support their work with children and adults with Down syndrome throughout Ireland.

“We’re so lucky to have Down Syndrome Ireland, and they need our support to continue supporting people with Down syndrome,” added Sarah.

People are also encouraged to wear odd socks to mark World Down Syndrome Day, to represent the extra chromosome that people with Down syndrome have, and Sarah and her family will proudly wear odd socks on the day.

Reflecting on the impact Frankie has on her family, Sarah said: “Frankie is really social, she loves to entertain and if we’re in a shop she’ll try to get everyone’s attention. She makes us laugh every day.

“I think that me and Will are different people now. We appreciate different things that we didn’t before, like us all being together, and putting our children to bed at night and they’re all at home.

“There’s a depth to everything Frankie is and will be, and everything she brings to our lives.”

To register for the Purple Run, visit downsyndrome.ie/event/virtual-purple-run-2021, and for further information on Down Syndrome Ireland, visit downsyndrome.ie.

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