World Down Syndrome Day: ‘It felt like my world fell apart — but Elena is an absolute joy’

Little Elena at home with mum Leona Johnston

When her baby daughter was diagnosed with Down syndrome, Leona Johnston felt like her world had come crashing down.

But now, 19 months on, little Elena is going from strength to strength — and Leona wants to share the “absolute joy” her daughter brings.

Ahead of World Down Syndrome Awareness Day today, Leona, 32, spoke candidly about what it’s like raising a child with the condition.

Leona, from Monifieth, said: “I decided for World Down Syndrome Day I would do something positive to celebrate how amazing Elena is. Her speech is very delayed. At 19 months old, she still does not babble “mama” or “dada” like most others would. She cannot yet crawl stand or walk.

“I have had to take a career break from work to be Elena’s full-time carer, but she is an absolute joy with an infectious smile and laugh.”

Leona admitted she was initially devastated by Elena’s diagnosis.

“We had the Down syndrome test, which came back low risk, and our 12 and 20- week scans showed no abnormalities,” she said.

“I had lots of extra scans due to reduced movements but no problems were detected. However, 24 hours after Elena was born we were hit with the bombshell that she had Down syndrome. I felt like my world had come crumbling down.”

But little did Leona know things were about to get much worse.

She said: “Another 24 hours later, we were hit with much worse news — Elena had a very serious heart defect. Suddenly Down syndrome seemed insignificant. Elena went into heart failure at just one week old and was very ill.”

Elena had heart surgery at nine weeks old.

She added: “I handed her over to the surgeon at 9am and we were told the operation would take about six hours. By 7pm we still hadn’t heard a thing and feared the worst.

“Eventually we met with the surgeon in the evening. Her op had been complex because she was so small and her heart had changed rhythm when they sedated her. Elena’s chest was open for five days. She had to be kept chilled and paralysed to allow her heart to recover. She spent a week in ICU, a week in HDU and a week in the cardiac ward at Glasgow children’s ward”

Leona said Elena still has a hole in her heart and leaky valves, but hopefully she should not need future surgery.

Today, Leona is held a fundraising coffee morning for Dundee Disabled Children’s Association, where Elena enjoys playgroups and Makaton sign language classes.

She said: “I contacted a few local businesses and posted the prizes on Facebook. The next thing it took off. I was overwhelmed by the generosity of so many people who donated.”