A newborn baby is facing a race against time to live after being rushed into hospital at just four weeks old.
Now aged five months, Leyla Bell has spent more of her life in hospital than at home with her family.
When she returned home with her mother Savana, 32, everything seemed fine – all the checks in the hospital had come back clear.
Then Leyla developed a rash on her chest.
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Her family are now in desperate need of a heart transplant for their newborn who they say is on ‘borrowed time’.
The youngster, from Heywood, has been diagnosed with a rare condition that has left the side of her heart weak and ‘spongy’.
speaking to the MEN Savana said: “She was born on September 2, I had a healthy pregnancy, but she was 15 days late born by emergency C-section.
“She had a chest x-ray at birth which showed no issues, she went home, everything was fine and on October 1 I noticed a rash on her chest.
“So I rang the GP, got an appointment and when I got there she lost her voice, and the rash was gone.
“But she had what they called increased worker breathing so she sent us to Oldham Royal, and they sent us home saying it was basically just a cold.
“Then on Monday, she had a bottle in the morning but wouldn’t have anything else throughout the day, which is very unlike her.
“I rank 111 they sent a first responder but she looked worse so before they arrived, I rank 999 and we were transferred to North Manchester general, they did a chest x-ray and that showed an enlarged heart and liver.”
After an inspection from specialists, Leyla was transferred to Royal Manchester Children’s hospital for an echocardiogram.
Just four weeks after she was born, little Leyla Bell was diagnosed with noncompaction cardiomyopathy (NCC) a rare congenital disease of heart muscle.
After a short while at the hospital, Leyla’s condition began to improve and she was set to return home in time for Christmas.
But unfortunately her heart failed again and she had to be incubated.
Leyla is now living at 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’.
Savana says Leyla is steadily improving thanks to a ventilator that is helping her breath, however, she is in desperate need of a transplant as her heart is just not strong enough to support her as she grows.
She said: “She’s on the urgent transplant waiting list and is currently doing well.
“But without a heart she’s on borrowed time.
“But we’re very best she’s still here with us, if she hadn’t had a Berlin heart she probably would have died already because her body just couldn’t cope with her body growing.”
“The average wait is six to 12 months, but you can wait longer – you can wait less, unfortunately it’s a lottery.”
Leyla has now spent more of her life in hospital than at home with her dad Martin, 43 and brothers Kian, 14 and Kayden, 12.
The family are hoping her story can not only help find her a donor, but also highlight the importance of organ donations for children.
She said: “Unfortunately nobody wants to talk about organ donation for children because, we’ve got to wait for a family to go through what we’re trying to avoid.
“It’s really hard. You don’t have a child for this, it’s something you read about and don’t expect it to happen to you.”
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