Olivia's story

When little Olivia Clare died two weeks short of her first birthday she’d already undergone open heart surgery four times and had a pacemaker fitted.

A scan on Christmas Day 2018 found the then five-day-old baby had been born with several holes in her heart.

Olivia was also diagnosed with a problem with her aortic arch and a rare congenital heart disease called Shone’s Complex and passed away in December 2019 after a brave battle for life.

“To look at Olivia you wouldn’t have thought anything was wrong,” said her mum Jess Clare, 30. “Her smile lit up the room. I can’t remember a time when she was upset. She used to entertain the staff in the ward all the time.”

When her daughter died, the couple got in touch with a Merseyside bereavement charity called Love, Jasmine.

The charity was set up in 2016 by the parents of six-year-old Jasmine Lapsley, who died in 2014 during a family holiday to Wales after choking on a grape.

The charity was awarded £9,500 by the Steve Morgan Foundation after being faced with being unable to pay its sessional counsellors because of Covid-19.

Jess said: “I don’t think we could have got through it without Love, Jasmine. We had lots of well-meaning family and friends but they could never truly understand what it’s like to lose a child because thankfully they’ve not been through it.

“We’re still struggling with it but because of the funding from the Steve Morgan Foundation we’re able to stay in touch with the charity which is really important as we’ve currently got limited contact with our family because of Covid-19.”

Recalling their story Jess and her 31-year-old husband Paul had no idea their only child was ill when she was born in December 2018.

“Nothing was picked up during the pregnancy,” she said. “After she was born they thought she might have a murmur but a scan on Christmas Day found several issues with her heart. Devastating though it was we were told by the doctors it was a condition they could fix.

“She was moved to Alder Hey Hospital and Olivia was operated on and we were discharged in the January and weren’t expecting any more problems. Then she was readmitted back into hospital in June 2019 for similar surgery as the first time.”

Soon afterwards Olivia started experiencing problems of breathlessness and a scan revealed her heart was working harder than it should have been and was under a lot of strain. 

After more surgery, she was much better and discharged in late November. She passed away just over a week later. During her life she’d undergone surgery eight times and had a pacemaker fitted.

The couple formed such a close bond with one of Olivia’s surgeons Dr Ram Dhannapuneni, they went on to raise £21,900 for the Healing Little Hearts charity which provides free heart surgery to babies and children in developing parts of the world. 

Paul said: “The surgeons were brilliant. We decided to raise money for the charity Healing Little Hearts to keep her memory alive. Our original target was £500 but we ended up raising a lot more. Hopefully it will give many children the chance of life saving surgery.”

The couple got in touch with Love, Jasmine soon afterwards and found a kindred spirit.

Jess said: “We struggle with our loss every day but having an outlet to talk to like Love, Jasmine is really helpful.”

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