The parents of a six-year-old girl born with half a heart say every single day they spend with her is a blessing.

Leah Barclay is one of only two children in the UK with this extremely rare disease and the only one in Scotland.

At the 20-week ultrasound, Nicola and Simon Barclay were told there was something wrong with Leah’s heart.

Doctors initially suspected a hole in the heart, but it turned out that Leah had half a heart and four other heart defects.

With no chance of survival, Leah has been fighting for her life since her first breath.

“We expected to lose her,” Leah’s mother Nicola told STV News.

“We had our whole family there in one room, grandparents, friends, the children. When Leah came out, we were told that she would not scream, she would not make any noise because she did not have the strength to do so.

“When they cut the umbilical cord, Leah screamed and I don’t think I’ve ever been so shocked in my life.”

At eight weeks old, she had her first open-heart surgery. A leading paediatric heart specialist in Birmingham was willing to offer Leah the operation in three stages to give her the best chance of living as normal a life as possible.

During the 13-hour procedure, Leah’s heart was resuscitated seven times. It was the first of three operations, the last of which is scheduled for 2022.

“She just turned to me and said, ‘No more daddy, I’m done,'” Simon explained.

“When we took her to the operating theatre in Birmingham, she was reluctant to enter the room. She was screaming and scratching herself, she was terrified,” he added.

Leah’s family say they have received invaluable support from the charity Children’s Hospices Across Scotland, including respite care at Rachel House Hospice in Kinross.

CHAS has supported over 400 babies and children in the last year and supported hundreds in palliative care.

The charity has also launched a new fundraising campaign to raise awareness of the important role nurses play in the lives of dying children.

Nicola said: “Life can be really tough but we have had some special moments along the way and we always try to remember how lucky we are to have Leah in our lives.”

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