Parents of girl born with extremely rare heart condition say every day with their daughter is a blessing

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

Leah Barclay has four additional heart problems and is one of only two children in the UK with the combined condition.

Nicola and Simon Barclay were told at the 20-week scan that something was wrong with Leah’s heart.

Doctors initially suspected a hole in the heart but it transpired that Leah had half a heart and four additional heart defects.

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

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

“We had all our family in a room there, grandparents, friends, the children. When Leah came out, we were told that she wouldn’t scream, she wouldn’t make a noise because she wouldn’t have the energy to.

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

At eight-weeks-old, she underwent 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 restarted seven times. It was the first of three operations, with the final one in 2022.

‘‘She just turned to me and said ‘dad no more, I’m done,'” Simon explained.

‘‘When we took her through to the operation room in Birmingham, she was reluctant to go into the room. She was really screaming and scratching, she was terrified,” he added.

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

CHAS has supported more than 400 babies and children in the last year, as well as hundreds receiving palliative care.

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

Nicola said: ‘‘Life can be really hard, 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.”