A mum has shared her harrowing experience of the organ donor waiting list as her baby girl with a mechanical heart is in desperate need of a life-saving transplant.
One-year-old Leyla Bell, from Heywood, Manchester, has spent almost her entire life so far in hospital after the then-seemingly healthy newborn was rushed to hospital last October, just a month after her birth.
She was eventually diagnosed with dilated cardiomyopathy – a type of heart muscle disease that causes the heart chambers to grow larger – and her body had created a rare gene known as ‘TPM1’, which causes further health issues.
The devastating news means the brave tot is in desperate need of a transplant – but while she waits, she has been fitted with a mechanical heart assistant device known as a ‘Berlin Heart’.
In her first year of life, little Leyla has overcome so much including a paralysing stroke and sepsis.
Now, her parents, Savana, 32, and Martin, 42, are riddled with anxiety as they wait for an organ donor to save their baby girl’s life – but they aren’t giving up hope.
“As unclear as Leyla’s future is, we are hopeful,” Savana, who works as an estimator told NeedToKnow.online.
“The wait for a donor is long, scary, frustrating and upsetting.
“You aren’t waiting for someone else’s child to die – you are praying that when a parent is given the devastating news their child isn’t going to live, that they help saves yours.
“It’s the single most brave and selfless decision.
“Waiting for the call is an extremely mixed bag of emotions.”
“I try to take each day as it comes, focus on the life we plan to build when she does get the call, as we can’t live in the vicious circle of negativity – that’s no good for Leyla, she needs positive vibes around her.
“Her life expectancy with no donor is unknown. Without the Berlin Heart machine, she would already be dead – it keeps her alive.”
The news was particularly hard to take in given Leyla’s strong, healthy start to life.
Savana said: “After she was born, Leyla thrived and was a happy, content baby – our health visitor even said that she was the most alert baby she has seen in years.
“Leyla was born by emergency C-section on September 2nd, 2021, at 15 days late.
“I spiked a temperature during labour which meant unfortunately we had caught an infection.
She appeared fine, but as the midwife was dressing her, they noticed some irregular breathing.
“She was taken to the NICU, given 4 hours of oxygen, fed via a nasogastric tube for 48 hours and given five days of intravenous antibiotics.
“She also had a lumbar puncture, full sepsis screen and chest X-ray – all of these were clear.”
When her voice became “wheezy”, they were given a GP appointment immediately, who then sent Leyla to hospital for tests, where they found she had an upper respiratory tract infection.
Savana added: “We were taken to Oldham Royal and kept in for observation for eight hours and sent home with saline drops for a cold.
“I presumed the doctors knew best and took Leyla home.”
However, Savana noticed something was wrong when her daughter wouldn’t feed and called an ambulance.
In hospital, doctors found that Leyla had an enlarged heart and liver and it was advised that the tot would be placed on a ventilator due to her irregular breathing.
Overnight Leyla’s conditioned worsened and the paediatric transport service were called to transfer her to the Royal Manchester Children’s Hospital to the intensive care unit.
Savana and Martin were then given the shock of a lifetime when their baby girl’s heart stopped beating – but thankfully doctors were able to save her with adrenaline and CPR.
Savana said: “When Leyla’s heart stopped, I was in a state of shock I couldn’t comprehend what I was seeing.
It stopped due to all the medicines and the intubation process.
“Doctors informed us she is suffering from dilated cardiomyopathy – a type of heart muscle disease that causes the heart chambers to grow larger.
“The day we moved to a ward we were given some upsetting news; Leyla’s genetic tests had come back and she has a rare gene known as ‘TPM1’ that her own body had created.”
Cardiomyopathy is a general term for diseases of the heart muscle, where the walls of the heart chambers have become stretched, thickened, or stiff.
This affects the heart’s ability to pump blood around the body.
TPM1 is where protein and amino acid has mixed together and created a faulty gene, causing health issues.
Only two other people in the world are known to have been diagnosed with it, according to the family.
As little Leyla continued her treatment, Savana and Martin were hopeful that their baby girl would make it home in time for Christmas.
Instead, the poorly child was unable to cope without a ventilator and was listed for an urgent heart transplant – which will be crucial for her survival.
Savana said: “Leyla deteriorated in early November as her lungs filled with fluid due to her mitral valve leak, we returned to ICU and she failed extubation [removal of an endotracheal tube] on 14 November – she has been ventilated since.
“On December 10 she was urgently listed for a heart transplant and we waited for a bed in Newcastle. “Hearing we needed a transplant was scary, we knew the risks involved, the potential wait times, the fact it wasn’t a cure.”
Leyla was quickly fitted with the Berlin Heart device, but has continued to suffer infections since which have led to her needing additional support and treatment.
Sadly, her condition deteriorated further in May when she suffered a stroke, leaving her paralysed down her right side.
Savana said: “When she had her stroke I was moving rooms – they had just started allowing siblings to visit, so we had been moved to a bigger room.
“The sister rang and said ‘I’m sorry but Leyla’s not moving her right side’. I broke down crying because I instantly knew what that meant. I hung up and came straight over.
“She was absolutely fine bar the paralysed right side, there was no movement at all.
“The stroke and paralysis meant she was removed from the transplant list as if a heart became available, the doctors were worried about Leyla’s ability to survive the operation.”
However, the plucky tot quickly improved and is now viable for a transplant again.
While she waits for the lifesaving operation, she is set to be desensitised, which involves removing her antibodies, as she is currently excluded from 98% of the donor pool.
Her parents hope her chances will then increase, and their little girl will be saved.
