Family ‘thought everything was fine’ before newborn baby receives heartbreaking diagnosis

A newborn baby faces a race against time to live after being rushed to hospital at just four weeks old.

Now five months old, 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, all seemed well – all the hospital checks 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 baby who they say is on ‘borrowed time’.

The youngster, from Heywood, was diagnosed with a rare condition which left the side of her heart weak and ‘spongy’.

Addressing the MEN Savana said: “She was born on September 2, I had a healthy pregnancy, but she was born 15 days late by emergency Caesarean section.

Leyla’s mum knew something was wrong when she noticed a rash on her skin

“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 with mom Savana and dad Martin
Leyla with mom Savana and dad Martin

After an inspection by specialists, Leyla was transferred to Royal Manchester Children’s Hospital for an echocardiogram.

Just four weeks after her birth, baby Leyla Bell was diagnosed with Non-Compaction Cardiomyopathy (NCC), a rare congenital disease of the heart muscle.

After a short stay in hospital, Leyla’s condition began to improve and she was due home in time for Christmas.

But unfortunately, her heart gave out again and she had to be incubated.

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’.

Savana says Leyla is steadily improving on a ventilator to help her breathe, however, she desperately needs a transplant because her heart just isn’t strong enough to support her as she grows.

Leyla with brothers Kayden and Kian, Heywood
Leyla with brothers Kayden and Kian, Heywood

She said: ‘She is on the urgent transplant waiting list and is currently doing well.

“But heartless, she’s 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.”

Leyla has now spent more of her life in hospital than at home with her father Martin, 43, and brothers Kian, 14, and Kayden, 12.

The family hopes that her story can not only help them find a donor, but also highlight the importance of organ donation for children.

She said: “Unfortunately nobody 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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