Leah's story

Little Leah Barclay was born with only half a heart as well as four other very serious heart conditions which were diagnosed while she was in her mother’s womb.

The seven-year-old, from Aberdeen, is one of only two children in the UK to have such a rare combined cardiac condition.

Doctors told Leah’s parents Nicola and Simon at their 20 week scan that it was highly unlikely their baby would survive the birth and offered a medical termination at that time. Despite the risks the couple decided they wanted to continue the pregnancy and let their baby decide how long she wanted to live.

Against all odds Leah was born on 16th March 2017 and, ever since, has continued her incredible fight for life.

Weighing only 4 lbs at birth, Leah was taken straight to intensive care and wired up to lots of machines to help her survive. She was then transferred by helicopter to Glasgow for specialist care but began losing weight rapidly.

“This was because, for Leah, every time she takes a breath it’s like running a mile,” Nicola explained.

“She was fully ventilated and fed fatty fluids to help her put on weight but we were repeatedly told she was deteriorating and that there was nothing more they could do for her in Glasgow apart from offer palliative care.”

Thankfully, a leading paediatric heart specialist at Birmingham Children’s Hospital (BCH) agreed to give Leah the best chance of survival by operating on her heart in three stages.

Leah underwent her first open heart surgery, a procedure called the ‘Norwood’, aged just 8 weeks old. During the 13-hour procedure, she had to have her heart restarted 7 times.

Nicola, who is also mum to Mia (13) and Sasha (17) said: “It was a miracle she survived that first surgery but once again our little girl who wasn’t supposed to survive even a single minute went and defied all the odds and amazed us all.”

Leah stayed in hospital in Birmingham recovering for six months and was eventually allowed to continue her recovery at home after her parents turned their house into a makeshift hospital and ensured everything was as sterile as it could be.

“Finally our older girls could hug their little sister – they hadn’t been able to do that for six months and they were so happy to have her home. They both just adored her,” said Nicola.

“It was lovely getting to all be back at home together but only immediate family could see her because of the infection risks. We had to keep everything extremely sterile all the time as any type of infection could kill her.”

When Leah was about one and a half the family were offered support through CHAS and began having respite visits to Rachel House hospice in Kinross.

Nicola said: “From our very first visit to Rachel House we felt at home and we felt safe. Leah is such a little character and loved the attention, especially from Gillian, her keyworker. She calls Rachel House her “happy place” and says it always feels like being on holiday.

“She loves choosing her own bedding and bringing her favourite toys with her. She really enjoys the soft play and playing with the toys in the playroom especially the toy kitchen. She also loves arts and crafts with the activity team and making friends. The only thing is Leah wants to do everything at once and can very quickly burn herself out. Her lips will go blue and she often has to take breaks to conserve her energy before she goes from one activity to the next. The staff all understand this though and are great with her.

“It is funny because Leah hates hospitals but she doesn’t see Rachel House in the same light despite the fact there are doctors and nurses there too. She is petrified when she goes into a hospital because she associates it with bad things happening to her and with her also being autistic her senses are always heightened. But she loves Rachel House and always checks the calendar every day to see how many sleeps til she can go back to her “happy place”.

“The whole family love going to Rachel House because we can all just relax. We know Leah is being well cared for by the nurses and care team every second of the time we are there so we always have the most peaceful nights sleep at Rachel House knowing Leah is receiving the very best care.

“At home Mia sleeps in the same room as Leah but at Rachel House Mia can get her own room so she gets a break too without the sound of machines bleeping all night. We can also go out on day trips with Mia and Sasha while Leah is enjoying being looked after for example go to the Dunfermline shops or go mini golfing or bowling, just normal family stuff.