Baby Leyla living with mechanical heart after 300 days in hospital
A BABY who has spent most of her short life in hospital is surviving using a mechanical heart while she waits for critical surgery.
At a month old, little Leyla Bell was rushed to North Manchester General Hospital, where she was born, after suffering what doctors initially thought was a respiratory infection.
Mum Savana, 32, from Heywood, said: “After she had a chest X-ray the consultant on call noticed she had an enlarged heart and liver. He acted extremely quickly as Leyla required a higher level of care that only the Royal Manchester Children’s Hospital could provide.
“They advised us that Leyla needed to be placed on a ventilator due to her irregular breathing.
“As they attempted intubation Leyla’s heart stopped and she required adrenaline and CPR.
“Thankfully, due to their efforts we made it to the Paediatric Intensive Care Unit (PICU) at Royal Manchester. It was here that Leyla had her ecocardiogram and the doctors informed us she is suffering from dilated cardiomyopathy – the cause for this was still under investigation.
“We were told that the next 24 hours were crucial for Leyla.”
Savana recalls how an agonising 24 hours passed – ‘and then another and another.’
She said: “It was awful. When we went into hospital we presumed we would be home in a couple of days. I was absolutely terrified that we were going to lose her. It was every parent’s worst nightmare.”
Savana, who also has two stepsons Kian, 14, and Kayden, 12, with husband Martin, 43, added: “After 18 long days Leyla was removed from all breathing support, her consultant was happy with her progress and happy to move us to a ward.”
But that day the family was given news that genetic tests had come back and showed Leyla has a rare gene her own body had created, which caused two types of cardiomyopathy.
The gene is so rare, Savanna says that only two other people in the world have been diagnosed with it.
Leyla was then treated at Alder Hey children’s hospital in Liverpool before being moved to Newcastle’s Freeman hospital and put on a mechanical Berlin Heart BIVAD device, which takes over the work of one or both sides of the child’s own heart.
The tiny tot also had a tracheostomy – a tube inserted into her windpipe – so she could have a more normal life in hospital and was put on the heart transplant list, which she temporarily came off after suffering a stroke.
Leyla is now 11 month old – an age her family feared she would never see.
Savana said: “We’ve spent 311 days in hospital so far, a journey we truly hoped was coming to an end soon with a donor heart. Unfortunately Leyla’s journey is far from over.
“The level of antibodies in her blood is extremely high and she excludes 98 per cent of the donor pool for a heart. This is new information and obviously extremely distressing for us as parents. There are treatments available to desensitise Leyla’s antibodies, enabling her to be matched, but the team do not feel she is stable enough for this at the moment.
“After a lot of discussion between all of the staff involved in her care we were given three options: do nothing and pray the two per cent chance comes up before she deteriorates further; operate on her mitral valve that leaks blood back into her lungs, or palliative care.
“Unless a heart that matches becomes available in the very near future option two is where we are.
“Two weeks from now Leyla’s amazing surgeon will operate on our baby again to hopefully repair/ replace the mitral valve causing her so many issues. Open heart surgery is extremely risky, there are many different complications that could occur, but it’s her only hope.”
Savana is staying with Leyla in Newcastle while the rest of the family remain at home.
She said: “The distance between here and home has never felt further, her dad and brothers miss her terribly but unfortunately we can’t change that at the moment.
“Leyla’s journey hasn’t been simple or plain sailing but she continues to smile her way through life blissfully unaware this situation isn’t ‘normal.’
“This isn’t news any parent wants to hear, it’s a huge blow to us all, but this is our only chance to bring our baby girl home.”