WHEN little Leyla Bell was first born, her mum Savana brought her home and everything seemed fine.
All checks at the hospital had come back clear, but just weeks later the newborn developed a rash on her chest.
Little Leyla, who lives in Heywood, Manchester with her family has now been diagnosed with a rare condition.
The youngster needs a heart transplant due to noncompaction cardiomyopathy (NCC)- a rare congenital disease of heart muscle.
The condition has left her heart 'weak and spongey' and her family has now said she has been left on 'borrowed time'.
Leyla was born on September 2 and mum Savanna, 32, said the pregnancy was healthy but that Leyla was born 15 days late and had to be delivered by emergency C-section.
She had a chest x-ray at which showed no complications, then on October 1, Savana noticed a rash on her chest.
Savana took Leyla to see a GP but when they got to the appointment the rash was gone, but Savanna said that Leyla had lost her voice.
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Medics said Leyla said 'increased worker breathing' and so was sent to Oldham Royal.
But Savanna said that medics at the hospital sent her home and said it 'was a cold'.
Less than two weeks later on October 14, Savanna said that Leyla had her bottle in the morning, but then wouldn't have anything else, which she said was 'unlike' her daughter.
“I rang 111 they sent a first responder but she looked worse so before they arrived, I rang 999 and we were transferred to North Manchester general, they did a chest x-ray and that showed an enlarged heart and liver", Savanna told the MEN.
After being looked over by specialists, Leyla was transferred to Royal Manchester Children's hospital for an echocardiogram.
It was there she was diagnosed with NCC and after a short stay in hospital, Leyla had been able to go home, just in time for her first Christmas.
She’s on the urgent transplant waiting list and is currently doing well. But without a heart she’s on borrowed time
But sadly her heart failed and she had to be incubated.
She is now living at a paediatric intensive care unit in Newcastle and is on the waiting list for a heart transplant.
Savanna said that this is a lottery and that Leyla is improving due to being on a ventilator.
However, she is in desperate need of a transplant as her heart is not strong enough to support her as she grows.
Savanna added: “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."
A Berlin heart is a type of assist device which mechanically supports the heart of patients who have heart failure.
What is noncompaction cardiomyopathy?
Non-compaction cardiomyopathy (NCM) is a myocardial disorder.
The British Medical Journal (BMJ) states that it is thought to occur due to the failure of left ventricle (LV) compaction during embryogenesis, leading to distinct morphological characteristics in the ventricular chamber
While some of the main signs can be spotted, others are experienced in the heart, which can make it difficult for children to communicate them to their parents or carers.
Some of the signs include:
- fluttery heartbeats
- palpitations
- swelling of the legs
- dizziness
- fainting
- blood clots
- trouble breathing
- fatigue
Because of her condition, Leyla has spent more time in hospital than at home with her brothers Kian, 14 and Kayden, 12 and her dad Martin, 43.
The family have shared their story in the hope that they can find a donor and to highlight the importance of organ donations for children.
Savanna said that it's a hard subject to tackle and they have to wait for a family to go through what they are trying to avoid in order to save their little girl.
Both Savanna and Martin want to be by their daughters side during this time, which has meant them staying at the hospital and long drives from Manchester to Newcastle.
Friend Joanne Lawton has set up a GoFundMe page to help the family.
So far £7,505 has been raised.
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