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Laila's Journey

27 February 2024 Laila hosp bed 2

This Heart Month, hear from hospital Mum, Ashley, about her daughter's courageous battle with multiple, complex cardiac conditions.

‘In 2010, we tragically lost our daughter, Aliya, who was stillborn.’

‘Two years later, I became pregnant with her sister, Laila.’

‘Strangely, despite Laila's due date being in March, she arrived on February 13th, exactly two years after I learned of Aliya's passing in my womb.’

‘After being discharged, we returned the next day for Laila's hearing test, only to discover her oxygen levels were slightly low.’

‘She was taken to the special care baby unit for oxygen support.’

‘That's when everything turned upside down.’

Ashley, Laila's mum

‘The oxygen didn't improve her condition, leading us to be rushed from our local hospital, St. John's in Livingstone, to Glasgow in a neonatal ambulance. Laila was just one day old.’

laila baby 2‘Upon arrival, we were greeted by the cardiac and paediatric intensive care teams.’

‘My husband and I were ushered into a room and informed of Laila's grave condition and slim chances of survival.’

‘The entire ordeal was incredibly stressful, especially considering our previous loss. We were completely blindsided. It was such a difficult time.’

Ashley, Laila's mum

‘Nobody could give me a leaflet for Laila’

Laila was born with a number of complex heart conditions, including Pulmonary Atresia, Transposition of the Great Arteries, Complete Atrioventricular Septal Defect (AVSD), and Heterotaxy Syndrome.

‘She also has no spleen, which means she has very little immunity and picks up every illness under the sun.’

‘A far as we are aware, Laila is the only child in the UK with her genetic makeup.’

Ashley, Laila’s Mum

‘Usually, when you are told that your child has a heart condition, the doctors can give you a leaflet about it to help you. Nobody could give me a leaflet for Laila. You could give me about four different leaflets, but each of those leaflets would contradict each other.’

‘Her combination of conditions is completely unique.’

‘It’s been hard for Laila as she can’t reach out to anyone else who shares her experience. It’s so isolating.’

‘It was a challenge for the doctors, too.’

‘On paper, Laila should not be here. But, despite her many health problems, she is still fighting and recently celebrated her twelfth birthday!’

‘One surgery after another’

Laila underwent her first open-heart surgery when she was just six days old.

Shortly after, complications arose when her NG tube revealed a malrotated bowel, a common issue for children with heterotaxy syndrome due to organ alignment.

At 10 days old, she underwent the Ladd's procedure to fix this.

Following surgery, Laila spent the first two months of her life in Yorkhill, the old children’s hospital.

‘She was very petite and really struggled to put on weight.’

‘Despite her small size, Laila has always taken a huge amount of medicine a day.’

‘It’s varied over the years, but right now, Laila takes 15 syringes of medicine a day.’

Ashley, Laila’s Mum

At 15 months old, Laila faced her second open-heart surgery, the Glenn procedure, which led to severe complications.

‘This is the point where everything went drastically wrong for Laila.’

Her health deteriorated rapidly, necessitating a week in intensive care, during which her saturations dropped dangerously low, and she developed multiple clots.

‘She was almost blue.’

Ashley, Laila’s Mum

A bilateral Glenn was performed due to her heterotaxy, and she spent eight days on ECMO.

As her chest was open, Laila also grew E.coli.

‘We weren’t just battling against trying to get her heart to repair itself or her organs to pick up, we were fighting severe infection.’

‘It was a horrendous time.’

Ashley, Laila’s Mum

laila baby

'My eldest daughter was having to live at home with my mum at this time, while we were practically living in intensive care.'

‘I have a huge amount of trust in the doctors and Laila wouldn’t be here without them.’

‘Laila ended up with a bovine patch.’

‘We were told on at least three occasions to expect her to pass that night.’

Ashley, Laila’s Mum

‘After a wee bit of time, she started to show us she was fighting back.’

‘She became so reliant on the drugs that she went through a really rough withdrawal from the sedation, but eventually we did make it home from hospital.’

‘Despite the multiple surgeries and near-death experiences, Laila continued to fight, defying all the odds stacked against her.’

‘She became a shadow of herself’

‘It’s comforting to know that Laila can't remember these early years in hospital.’

‘As she got older and more aware of her health and surroundings, things became even harder.’

‘Hearing your child at 6 years old telling you how bad she feels is horrific.’

Ashley, Laila’s Mum

In August 2019, 6-year-old Laila was admitted to hospital for her third open heart surgery.

Laila hosp bed 2‘She was so out of her depth, she was terrified. There had been a lot of change, as we had moved from Yorkhill to the Royal Hospital for Children at this point.’

‘Laila underwent the Fontan Surgery in August, but unfortunately there were complications, and blood started to bypass through her liver.’

‘Laila’s liver enzymes were all over the place, and in the end, what should have been one surgery turned into three different surgeries and a lengthy hospital stay.’

Laila bed hosp

‘She was tiny, purple, and had no energy.’

Ashley, Laila’s Mum

‘The intensive care doctors were unfamiliar to Laila, which she found tough.’

‘She panicked all the time over who was coming in and I had to be there all the time. It was so much for her.’

‘There’s so many small things that you take for granted that you can’t do in hospital.’  

‘For example, Laila was six and could go to the toilet herself, but all of a sudden, she was back to wearing nappies and couldn’t get out of bed to go to the toilet because she was in intensive care.’

‘Wee things like that were massive for her because she didn’t want a nappy or people to see her like this.’

‘She struggled mentally.’

Ashley, Laila’s Mum

‘You can't hide anything from Laila. She wants to know everything, the good and the bad. Sometimes you want to protect your child and hold back some of that information, but you can’t do that with Laila, it makes it worse.’

‘She’s very switched on. She’s spent her whole life in a medical environment. She's very aware of what is going on around her.’

Ashley, Laila’s Mum

‘As she got older, she became a bit of a shadow of herself. This wee bright, feisty person, became someone who hardly spoke.’

How your donations helped

‘This is the point where the hospital play specialist, Terri, really helped us.’

‘Laila loved visiting Terri downstairs in the Teddy Hospital, and they formed a really close bond together.’

Our charity-funded Teddy Hospital gives children like Laila the opportunity to learn about upcoming treatments in a non-clinical environment.

Laila teddy hosp‘Laila always looked forward to these visits as it gave her a chance to get off the ward for a bit and to choose a toy from the toy box.’

‘She still has all her teddies from the Teddy Hospital, each with their own little cannulas to match Laila’s.’

laila teddy

‘These visits to the Teddy Hospital helped make things more bearable for Laila.’

Ashley, Laila’s Mum

‘A trip down to the teddy hospital or down to the play team makes a huge difference to kids in hospital.’

‘For her to get those wee gifts from the play team also took a bit of financial pressure away from us during a difficult time when we were away from home.’

‘As well as forming a close bond with the play specialist, Terri, Laila’s relationship with Dr Ben Smith, our cardiology consultant on 1E, is like something I’ve never seen before.’

‘The love and affection she has for that guy is unreal.’

‘He feels more like family than he does a doctor. He knows how to handle her in a way that gives her peace and comfort and we’re so grateful for everything he’s done for us.’

Laila hosp bed jigsaw

‘It was awful spending so much time away from Lailas’s siblings, Elise and Dylan.’

Ashley, Laila’s Mum

‘Thanks to Ronald McDonald House, they were able to come up and visit at the weekends, but how do you spend quality time together as a family when one of your children is hooked up to a ventilator?’

‘It was tough for Laila too as she wanted to see her siblings, but sometimes it wasn’t appropriate to have them in the room with her.’

‘There were a couple of times where Laila wasn’t well enough to go to the hospital MediCinema, but I could take the other kids which was great. It’s an invaluable service, not just for sick kids but for their siblings and families too.’

Devastating news

‘In January 2020, we received the devastating news that Laila was in heart failure.’

‘Laila’s heart is too damaged. There’s nothing else they can do surgically to fix it.’

‘She is currently on the waiting list for a heart transplant.’

‘Another huge blow came in November 2021 when I lost my husband.’

‘For Laila to lose her dad at 9 years old was horrendous.’

Ashley, Laila’s Mum

‘It was too much. I had a child in heart failure. I had lost my husband. I had suddenly become a single parent. My whole world was upside down. I just didn’t know how to handle it.’

Life now

Thanks to the excellent care of Dr Ben Smith and the team on Ward 1E, Laila's condition is now stable, but realistically, she will need a new heart at some point.’

‘The long-term goal is for her to keep her heart as long as possible.’

‘We don’t know what the future holds, but Laila’s heart is not going to see her through to a long life that’s for sure. That’s the sad reality of it.’

‘If we can get her a wee bit bigger and stronger, the likelihood is she can take a small woman’s heart as kid’s hearts are not readily available.’

‘Laila has missed pretty much two whole years of school, but she’s not let it stop her.’

Laila school

‘She just wants to be a normal child. She wants to be seen like everybody else. But at the same time, she’s very proud of her scar, she’s very proud of her journey, she’s very proud to tell people her story.’

Ashley, Laila’s Mum

'Despite being in heart failure, Laila's condition has stabilised. For the first time in 6 years, she's managed to go 6 months without a hospital appointment.’

‘A few weeks ago, Laila celebrated her twelfth birthday at home with family.’

laila bday‘Laila is probably one of the most resilient children you’ll ever meet.’

‘After the journey that she has been through and the odds that have been stacked against her on so many occasions, she is still here today fighting. I’m so proud to call her my daughter.’