A baby who was rushed to hospital at just four weeks old faces a race against time to live.
Leyla Bell, now five months old, has spent most of her life in hospital.
When her mother Savana, 32, brought her home, everything seemed perfectly normal.
All of her hospital checks had come back clear, but then she developed a rash on her chest.
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Now the family say Leyla is on ‘borrowed time’ as she desperately needs a heart transplant.
The baby, from Heywood, has a rare condition which has left the side of his heart weak and ‘spongy’.
Speaking to the Manchester Evening News, Savana said: “She was born on September 2, I had a healthy pregnancy but she was born 15 days late by emergency Caesarean section.
“She had a chest X-ray at birth which showed no problems, she went home, everything was fine and on October 1 I noticed a rash on her chest.
“So I called the GP, got an appointment and when I arrived she lost her voice and the rash was gone.
“But she had what they called increased workers breathing, so she sent us to Oldham Royal, and they sent us home saying it was basically just a cold.
“Then on Monday, she drank a bottle in the morning but didn’t drink anything else all day, which is not like her at all.
“I called 111 they sent a first responder but she looked worse so before they arrived I called 999 and we were transferred to General in North Manchester they did a chest x-ray and it showed an enlarged heart and liver.”
Leyla was transferred to Royal Manchester Children’s Hospital for an echocardiogram after being examined by specialists.
It was only four weeks after he was born that the toddler was diagnosed with Non-Compaction Cardiomyopathy (NCC), a rare congenital disease of the heart muscle.
She was able to return home for Christmas after a short stay in hospital when her condition began to improve.
However, her heart gave out again and she had to be intubated.
Little Leyla now lives in a pediatric intensive care unit in Newcastle where she is on the waiting list for a heart transplant, which her mother describes as a ‘lottery’.
Her mother said she was improving steadily thanks to the ventilator helping her to breathe, but desperately needed a transplant because her heart couldn’t support her as she grew.
She said: ‘She is on the urgent transplant waiting list and is currently doing well.
“But heartless, she is on borrowed time.
“But we better have her still here with us, if she hadn’t had a Berliner heart she probably would have already died because her body just couldn’t keep up with the growth of her body.”
“The average wait is six to 12 months, but you can wait longer – you can wait less, unfortunately it’s a lottery.”
The little one spent more time in the hospital than at home with her father Martin, 43, and her brothers Kian, 14, and Kayden, 12.
The family hopes to be able to find a donor, but also stresses the importance of organ donation for children.
Savana said: Unfortunately, no one wants to talk about organ donation for children because we have to wait for a family to go through which we are trying to avoid.
“It’s really hard. You don’t have a kid for it, it’s something you read and don’t expect it to happen to you.”
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