When Savana Bell gave birth to her beautiful baby girl her world felt complete. Little Leyla was born 15 days late by emergency caesarean section.
Leyla had some irregular breathing because Savana temperature had spiked during labour which meant they had both caught an infection, the Manchester Evening News reports. She was taken to the new-born intensive care unit, given four hours of oxygen, fed via tube for 48 hours and given five days of intravenous antibiotics before they could finally both go home.
Despite this shaky start, little Leyla thrived as a happy content baby, described by the health visitor as the most alert baby she has seen in years.
So on Oct 1st, while dressing Leyla, Savana was concerned when she noticed a rash on her chest. She rang the GP for an appointment and was told they would call her back. She says: "During the time I waited for a call back she lost her voice and sounded wheezy.
"I rang the GP back and they saw me straight away, sending us to hospital as Leyla had increased worker breathing. Oldham hospital checked her over, put us in a room for observation and sent us home, saying Leyla had an upper respiratory tract infection."
Although worried, Savana, 32, who lives in Heywood, said she felt it was all controllable. "I thought ok this is easily solved with the drops they've given us," she says. But On Monday October 4th, Savana felt something was wrong when Leyla had a bottle in the morning but then nothing else. As this was so unlike her, a cautious Savana rang 111 who sent a 1st responder.
Savana says before they arrived little Leyla looked worse, so, growing increasingly concerned, she rang 999, this time requesting to go to North Manchester Hospital, where Leyla was born.
She says: "They thought Leyla had Bronchiolitis, however after she had a chest X-ray the consultant on call noticed she had an enlarged heart and liver. He acted extremely quickly contacting the NWTS team as Leyla required a higher level of care that only the Royal Manchester Children's Hospital could provide.
"The NWTS team arrived and they advised us that Leyla needed to be placed on a ventilator due to her irregular breathing. As they attempted intubation Leyla's heart stopped and she required adrenaline and CPR. Thankfully due to their efforts we made it to the Paediatric Intensive Care Unit (PICU) at Royal Manchester, it was here that Leyla had her Ecocardiogram and the doctors informed us she is suffering from Dilated Cardiomyopathy the cause for this was still under investigation.
"We were told that the next 24 hours were crucial for Leyla. We were fortunate that the hospital had some rooms which we were able to sleep in whilst they tried to stabilise our baby girl.
Savana recalls how an agonising 24 hours passed "and then another and another."
"It was awful. "she says. "When we went into hospital we presumed we would be home in a couple of days. I was absolutely terrified that we were going to lose her. It was every parent's worst nightmare."
Leyla had many samples of blood, urine and saliva taken to try and determine the cause of the heart problem.
Savana, who also has two step sons Kian, 14 and Kayden, 12 with husband Martin, 43 said: "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 of the drug and on day ten Leyla had her first dose.
"Due to the effects of this drug we were able to remove Leyla's ventilation support. After 18 long days Leyla was removed from all breathing support, her consultant was happy with her progress and happy to move us to a ward."
But the day Leyla moved to a ward the family were given some heart breaking news, Leyla's genetic tests had come back and showed she has a rare gene her own body had created, this caused not one but two types of Cardiomyopathy. The gene is so rare Savanna says that they only know of two other people in the world who have been diagnosed with it.
Savana says: "This didn't change our treatment plan just our prognosis. As unclear as Leyla's future was we remained hopeful, with each IV line of medication that the doctors removed, our baby became our baby again. Happy, smiley and active we moved to a ward, she began drinking from a bottle, wriggling down 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, home in time for Christmas."
But unfortunately, Leyla deteriorated quickly, returning to PICU on November 7 and again requiring a ventilator. Six days later doctors tried to take Leyla off it but unfortunately her heart couldn't cope breathing on her own.
Leyla was transferred to Alder Hey children's hospital on December 12th as a precaution, in case emergency ECMO was needed, before being transferred to Newcastle's Freeman hospital.
Leyla was then transferred to a Berlin Heart BIVAD device - a mechanical device which takes over the work of one or both sides of the child’s own heart. The tiny tot also had a tracheostomy - a tube inserted into her windpipe - so she could have a more normal life in hospital.
Savana said: "We have been told she will more than likely need to be ventilated until post transplant, due to her mitral valve leaking into her lungs and the four pipes in her chest from her berlin heart."
For a while Leyla progressed well and Savana says they were able to go out for almost daily walks and trips to the playroom. Unfortunately, in March Leyla developed a chest infection which set her back and she needed more support from the ventilator again, meaning her family were unable to to visit the playroom or go out for walks. Then a further tragedy was to strike.
Savana says: "In May when Leyla seemed a lot better from her bout of infections, she had a stroke, which left her paralysed down her right side, this 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. She was only off the list for nine days as her recovery was quicker than expected. Leyla's still got a weakness in her right side but we are seeing improvements."
Little Leyla's bad luck didn't end there. In June one of her berlin heart sites got infected, it then spread to her chest and blood causing sepsis, she needed a lot of strong intravenous antibiotics and was again suspended from the list, this time for three weeks.
Savana says: "Leyla's mitral valve has deteriorated which is why she's unable to have her ventilator settings reduced, meaning we are and have been unable to go off the unit for a number of weeks, the team have discussed what steps to take to make Leyla's quality of life better pre-transplant and also keep her as well as they can to be able to be on the transplant list.
"They upsized her ventricle on the 22nd July in the hope it would help but unfortunately the procedure hasn't been as successful as they wanted."
Leyla recently turned 11 months - a milestone her family were scared she would never see. Savana said: "We've spent 311 days in hospital so far, a journey we truly hoped was coming to an end soon with a donor heart. Unfortunately Leyla's journey is far from over.
"The level of antibodies in her blood is extremely high and she excludes 98 per cent of the donor pool for a heart. This is new information and obviously extremely distressing for us as parents. There are treatments available to desensitise Leyla's antibodies, enabling her to be matched but the team do not feel she is stable enough for this at the moment.
"After a lot of discussion between all of the staff involved in her care we were given three options, do nothing and pray the two per cent chance comes up before she deteriorates further, operate on her mitral valve that leaks blood back into her lungs or palliative care. Option one and three were not options for us. Leyla is strong, determined and has such a zest for life, that giving up is not an option. So unless a heart that matches becomes available in the very near future, option two is where we are.
"Two weeks from now Leyla's amazing surgeon will operate on our baby again to hopefully repair/replace the mitral valve causing her so many issues. Open heart surgery is extremely risky, there are many different complications that could occur, but it's her only hope."
"We are hoping that if the surgery goes well, Leyla may not need the berlin heart device long term again, she would however still need support for her heart in the form of drugs to help her remain stable. If this works then Leyla would have to remain in PICU here at the Freeman, to then have the treatment to remove her antibodies and bridge her to transplant.
"The distance between here and home has never felt further, her dad and brothers miss her terribly but unfortunately we can't change that at the moment. As a family we discussed moving here but we would have no support network to help with her brothers and they are also very settled in school and our community at home. Martin will continue to travel up as much as he can in between caring for the boys and working, I'll stay here with Leyla until the day we are able to come home and be a family.
"A journey we have been on for almost a year already is now most certainly going to be a much longer and tougher road than it has already. Leyla's journey hasn't been simple or plain sailing but she continues to smile her way through life blissfully unaware this situation isn't "normal".
