FIVE days after little Leyla Bell was born 15 days late, mum Savana finally got to take her little bundle home.
The newborn was thriving, happy and content, passing her hospital checks with flying colours - their health visitor noting she was "the most alert baby she'd seen in years".
But Leyla is now fighting for her life, and is in desperate need of a heart transplant.
The tot, who lives with her family in Heywood, Manchester, has been diagnosed with a rare condition that has left one side of her heart weak and 'spongy'.
She is suffering noncompaction and dilated cardiomyopathy (BCC) - a rare, congenital disease of the heart muscle.
Leyla was born 15 days late by emergency C-section on September 2 after a healthy pregnancy for Savana, 32.
Leyla was taken to NICU and given four hours of oxygen. She was fed via a feeding tube and given five days of IV antibiotics.
Doctors carried out a lumbar puncture test, full sepsis screen and chest X-ray - all came back clear.
But weeks later, on October 1, mum Savana noticed a rash on her chest.
"I rang the GP for an appointment and they said they'd call back," she said.
"In the time I waited for the call back she lost her voice and sounded wheezy.
"I rang the GP and they saw me straight away, by this point her rash had cleared up (she has sensitive skin, so it was just a reaction and nothing to do with her eventual diagnosis)."
The GP sent Leyla to Oldham Royal hospital, after detecting that the newborn had "increased worker breathing" - meaning she was finding it harder to breathe - which can lead to respiratory failure.
Medics checked her over before sending Leyla home telling mum Savana, it was an upper respiratory tract infection, or a cold.
"I thought OK, this is easily solved with the drops they've given us," Savana recalled.
Days later the 32-year-old noticed her daughter had taken one bottle in the morning, but nothing else, which was unlike her.
“I rang 111 they sent a first responder but unfortunately she looked worse before they arrived, so I rang 999 this time requesting we go to North Manchester General where she was born," she said.
"They thought Leyla had bronchiolitis, however after a chest X-ray the consultant on call noticed she had an enlarged heart and liver."
Leyla was quickly transferred to the Royal Manchester Children's Hospital where medics advised Savana that her daughter needed to be placed on a ventilator due to her irregular breathing.
As doctors tried to intubate Leyla her heart stopped and they had to perform CPR.
Leyla was given an echocardiogram, which revealed that she was suffering NCC.
"We were told that the next 24 hours were crucial for Leyla," says mum Savana. "We were fortunate that the hospital had rooms, where we could sleep while they tried to stabilise our baby girl.
"24 hours passed and then another and another. As each day went by we hoped and prayed for answers and improvements.
"On day six we were told that there had been no improvement and that our only hope was an unlicensed drug called Levosimendan.
"Thankfully the hospital got the authorisation for two doses and on day 10, Leyla had her first dose."
As a result of the drug's effects, medics were able to remove Leyla's ventilation support.
She was given a CPAP mask to help her breathing, before that was reduced to a nasal mask.
After 18 long days, all breathing support was removed and her consultant was happy with her progress, moving Leyla to a ward.
But that same day, the family received more upsetting news. Leyla's genetic test results were back, and had revealed she has a rare gene that caused dilated and non-compaction cardiomyopathy.
"The gene is so rare that we only know of two other people in the world who have been diagnosed with it," says Savana.
"It didn't change our treatment plan, we remained hopeful, and with each IV line of medication that the doctors removed our baby became our baby again.
"Happy, smiley and active, she was moved to a ward and began drinking from a bottle, wriggling in her cot, laughing at mummy and daddy, having cuddles with her big brothers and wearing clothes.
"Life seemed to be getting back to normal and we were heading for the front door, hoping to be home in time for Christmas."
But on November 7, Leyla deteriorated again and her heart failed.
She was intubated once again and once again the brave youngster defied the odds.
On November 13, medics tried to take Leyla off a ventilator but her heart couldn't cope.
She is now back on a ventilator and is living in the paediatric intensive care unit at Newcastle Freeman Hospital, where she is waiting on the transplant list.
Savana said that this is a lottery and that Leyla is improving due to being on a Berlin heart device and her "sheer determination to thrive".
However, she is in desperate need of a transplant as her heart is not strong enough to support her as she grows.
Savana 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.
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.
Savana 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 Savana 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.
