Leah's story

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.

“Leah has developed an amazing bond with her keyworker Gillian (Murdoch, SSN). She knows her personality and how to make her feel at ease. At the same time I have built up a really good relationship with Gillian too and really respect her honesty with me. She doesn’t sugarcoat anything and is always open with me. She is so caring and understanding and just gets it.

“The team at Rachel House do so much with Leah’s sisters too, offering dedicated sibling support and making sure they enjoy their stay just as much as Leah.

“I also appreciate the time they take helping me fill out medical paperwork which can be very complicated. One example was recently getting a CYPADM (Children and Young People Acute Deterioration form) organised as I was having difficulty getting one. I also appreciate their help in accessing services outside of CHAS such as counselling for Mia at her school. All of that has been such a big help. They go out of their way to help our family and it is so appreciated.”

Leah had her second open heart surgery, a procedure called the “Glen”, aged just two and a half, again in Birmingham.

Unfortunately, a few weeks later, she suffered some post-operative complications and had to be rushed back to surgery where she was operated on again for five hours. 

Following this Leah contracted sepsis in hospital and was very ill for many more weeks.

“Everything with Leah is always so hard, it feels like two steps forward, ten steps back,” Nicola said.

When the family finally came home in March 2020 Covid had hit so they had to be even more alert to infection risks than ever before. During this time Leah was losing weight so her nasal-gastro tube was changed to a peg-fed one which brought its own problems due to her wound taking a long time to heal. 

Despite all Leah has been through in her young life Nicola describes her as “the happiest little girl” and “a wee ray of sunshine”.

“She loves to help me with little tasks around the house like the washing. She’s a proper daddy’s girl and only her dad can put on her feed at night. If she is ill she wants me but for everything else it is her dad or Mia. She and Mia have a very close bond. If Leah hurts herself she goes to Mia and we often go into the room they share and find them cuddling each other.

“We have had to face the fact that Leah is so poorly that she could die at any time. Because of this, Simon gets up at 5.30am every morning to check she is still alive before Mia wakes up at 6am just in case.

“People say to me they don’t know how I keep going and I tell them I have no choice but to keep going and to be strong for Leah. Life can be really hard but we have some special moments along the way and always try to remember how lucky we are to have Leah in our lives. For every negative there comes a positive, and I tell myself there is always someone worse off.

“I am so proud of Leah – she’s such an inspiration and she has taught us all so much about life. I’m equally proud of Mia and Sasha too for the way they adapted to our new life once Leah came along and the way they love and care for their little sister. Before Leah was born we would go on holiday twice a year abroad then of course all that had to stop and 80% of our time had to be spent on Leah but Mia and Sasha never once complained. They love her to bits and just want to treasure every moment with her.

“I feel like having Leah taught them to be very empathetic and caring. Their teachers always tell me they have hearts of gold and always want to help care for others at school.”

Leah underwent her final open heart surgery, a procedure entitled the “Fontane” in 2022 when she was aged 5.

“The operation was touch and go and we nearly lost her,” said Nicola.

“Afterwards, when she woke up she wouldn’t speak to us then when she did start talking she said ‘No more’. I knew she meant no more operations so I said to her do you know what that means? And she said yes. She said to me “Mummy I don’t want any more operations. I’ve had enough. I just want to be a kid now.”

“I counted up all the times she had been put to sleep for her multiple surgeries and medical procedures and realised it had been 27 times so who can blame her for not wanting to go through any more?

“Our motto with Leah from the start has been that as long as she is fighting we will fight with her and whenever she tells us to stop we will respect her wishes. That time has now come and, as heartbreaking as it is, we have to remember we have had Leah for six wonderful years when she wasn’t supposed to survive even a single hour.

“As Leah is not a candidate for further cardiac surgery or a heart transplant we know not much more can be done for her medically so we are very aware that every single moment we spend with her is a blessing.

“We will continue to cherish each and every moment we have left with our wonderful little girl and make the most of all our future respite stays at Leah’s “happy place,” Rachel House. We can’t thank CHAS enough for helping us to make such precious memories together as a family that will last a lifetime.”