Voices from another mother – Savana Bell

This edition of voices from another mother is one that could not be closer to my heart. Here the mother of my granddaughter shares intimate accounts of Leyla’s fight to stay well enough to receive a life-saving transplant.

Leyla was born by emergency c-section on September 2nd 2021, she was 15 days late After a difficult and prolonged labour during which I spiked a temperature that meant we both caught an infection, Leyla was finally born at 14:20 on Sept 2nd.

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 an NG tube for 48 hours and given 5 days of intravenous antibiotics. She also had a lumbar puncture, full sepsis screen and chest X-ray, all of these were clear. We were both discharged after 5 days and went home.

Leyla thrived, she was a happy content baby and our health visitor commented she was the most alert baby that she had seen in years.

On Oct 1st whilst dressing Leyla, I noticed a rash on her chest. I rang the GP for an appointment and they said they’d call back, During the time I waited for a call back she lost her voice and sounded wheezy. After calling the GP again we were sent to Oldham hospital on account of Leyla’s increased worker breathing. She was checked out by the hospital who then sent us home saying that she had an upper respiratory tract infection. I thought ok, this is easily solved with the drops they’ve given us.

On Monday, October 4th Leyla had a bottle in the morning but then nothing else, which was unlike her, so I rang 111 who suggested a 1st responder should attend. She began to look worse so I rang 999, this time requesting to go to North Manchester, the hospital where Leyla had been born. They thought she 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 and as Leyla required a higher level of care that only the Royal Manchester Children’s Hospital could provide, she was quickly transferred there, but not before Leyla’s heart stopped as they tried to intubate her so that she could be placed on a ventilator for the journey.

After adrenaline and CPR Leyla responded and  we made it to the PICU unit at Royal Manchester, Leyla had an Echocardiogram and the doctors informed us she was suffering from Dilated Cardiomyopathy the cause for this was still under investigation.

We were told that the next 24 hours were critical for Leyla. We were fortunate that the hospital had some rooms where we were able to stay whilst they tried to stabilise our baby girl. Twenty-four hours passed and then another and another. Leyla had many samples of blood, urine and saliva taken to try and determine the cause of this heart problem. As each day went by we hoped and prayed for answers and improvements. On day 6 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 this drug and on day 10 Leyla had her first dose.

Due to the effects of this drug, we were able to remove Leyla’s ventilation support. She was given a C pap Mask to aid her breathing and then they reduced that further to a Hi Flo nasal mask. 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. The day we moved to a ward we were given some upsetting news, Leyla’s genetic tests had come back and showed she had a rare gene that her own body had created.  This caused not one, but two types of Cardiomyopathy. (Dilated and Non-compaction). This gene is so rare that we only know of two other people in the world who have been diagnosed with it. There could be more, but they have yet to be tested or their data published. This didn’t change our treatment plan just our prognosis. As unclear as Leyla’s future was, we remained hopeful as 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.

On November 7th unfortunately, Leyla deteriorated quickly, the cause again unknown. She returned to the PICU and required a ventilator. Thankfully Leyla’s heart was stronger this time and her heart coped with the intubation, our little girl had defied the odds once again.

On November 13th, they tried to take Leyla off the ventilator but her heart couldn’t cope with her trying to breathe on her own. She went back on a ventilator and her prognosis wasn’t great. We feared that the only option now would be a heart transplant which we knew gave her only a slim chance of survival at this stage. After meeting with the transplant coordinator,  Leyla was listed urgently for a heart transplant. and we had to wait for a bed at the Freeman hospital in Newcastle.

In the meantime, Leyla was transferred to Alder Hey children’s hospital on December the 12th, as a precaution in case she needed emergency ECMO treatment as we waited for a bed in Newcastle. On December the 19th, Leyla was transferred to the Freeman hospital in Newcastle.

On December the 20th, Leyla was placed on a Levatronix BIVAD, the initial plan was an LVAD but her right side couldn’t cope when the LVAD was put in. 10 days later Leyla was given a Berlin Heart BIVAD device. After a week or so She was still struggling to tolerate her feeds so she had an NJ fitted which helped and she started gaining weight.

 We tried to wean Leyla’s ventilation but she got tired on C pap, so the decision was made to give her a tracheostomy, this way she could progress and have a more normal life in the hospital. 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. 

Unfortunately, Martin, Leyla’s dad got covid on January 10th so we had to return home for 10 days to isolate, but the team at the Freeman looked after Leyla so well, sending us videos and photos daily. She had her first tracheostomy tube change while we were in isolation so the nurses were able to get her out of bed to play and for cuddles. 

Martin had to go home and back to work at the end of January as Leyla’s two brothers (Martin’s from a previous relationship who live with us and have done for years) plus our dog were being cared for by my mum at our house, we just couldn’t afford for him to be out of work anymore.

Leyla progressed well and we were able to go out for almost daily walks and trips to the playroom. Her ventilator settings were reduced and she was able to tolerate NG feeds instead of NJ feeds. In March Leyla developed a chest infection which set her back and she needed more support from the ventilator again, meaning we were unable to visit the playroom or go out for walks. She had the infection treated with antibiotics which cleared it, but around Easter, Leyla developed another infection which knocked her off again.

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 because had a heart became available the doctors were worried about Leyla’s ability to survive the operation. She was only off the list for 9 days as her recovery was quicker than expected. Leyla’s still got a weakness in her right side but we are seeing improvements. 

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, and she needed a lot of strong intravenous antibiotics which meant that she was suspended from the transplant list, this time for 3 weeks. Her mitral valve had deteriorated which is why she’s unable to have her ventilator settings reduced, meaning we were 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 she can be to stay on the transplant list.  We’ve had 5 really good days since the changes were made but we are so scared that another infection is just around the corner. She desperately needs a new heart NOW. Leyla’s been in hospital for 296 days 220 of them have been here at the Freeman hospital, spent in intensive care.

Leyla turned 11 months old 2 days ago, a milestone we were scared she would never see. We’ve spent 304 days in hospital so far, a journey we truly hoped was coming to an end soon with a donor heart. However, Leyla’s journey is far from over, the level of antibodies in her blood are extremely high and this excludes 98% of the donor pool for a heart.

This is new information and obviously extremely distressing for us as parents. There are treatments available to de-sensitise 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 have been given 3 options. Do nothing and pray the 2% chance of a transplant comes up before she deteriorates further, operate on the mitral valve that leaks blood back into her lungs or palliative care. Options 1 and 3 were no starters for us. Leyla’s 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 2 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. 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. Even if this works then Leyla would have to remain in the PICU here at the Freeman, to then have the treatment to remove her antibodies and bridge her to transplant. This isn’t news any parent wants to hear, it’s a huge blow to us all, but this is our only chance to bring our baby girl home.

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 been 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”.

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.

We truly appreciate everyone’s support, helping with the boys and the dog, visiting us here, raising money to help keep our family home, providing the boys with what they need and most of all the love and kindness shown to us by everyone.

If love could bring Leyla home she’d have been there months ago, that is something we are still very much working towards, it’s just going to be a longer harder road. We aren’t giving up, Leyla isn’t giving up and her fantastic medical team is 100% behind her! It isn’t all doom and gloom here two of Leyla’s best friends are doing amazingly well, one has recently gone home and the other shouldn’t be far off. We continue to pray for our day to come, we also remember all her other friends who sadly didn’t get that chance.

Please continue to share our posts, share Leyla’s story and raise awareness for organ donation as there are many children like Leyla waiting for the gift of life.