Early diagnosis
In August 2023 my five-week-old daughter, Myla, had a routine check-up with the Health Visitor, who noticed she looked mildly jaundiced.
A few days later, they confirmed she was jaundice-free, and we thought everything was fine. But soon after, Myla developed a rash near her eyes. On my mum’s advice, we had it checked out, and the doctor referred us to Forth Valley Royal Hospital. However, Myla was quickly transferred to Glasgow Royal Infirmary for further tests. While they couldn’t fully diagnose her, with her history of jaundice, the doctors suspected a liver issue. It was then decided that Myla should be sent to Leeds Children’s Hospital for specialist treatment.
We made the 220-mile journey from Glasgow to Leeds, where Myla was diagnosed with Biliary Atresia, a blockage in the tubes that carry bile from the liver to the gallbladder. She needed a procedure called a Kasai to remove the damaged bile ducts, which had to be done before she turned eight weeks old. The surgery was scheduled for three days later. During those first nights, I stayed by Myla’s side, and my husband, Liam, stayed in temporary accommodation on the ward. Knowing we couldn’t stay in the hospital long-term, the nurses arranged for us to stay at Eckersley House, a ‘Home from Home’ run by a charity called The Sick Children’s Trust. It was such a relief to know we could stay there as long as we needed, free of charge, especially being so far from home.
Treatment and transplant
Following the Kasai operation, we were hoping that Myla wouldn’t have a long stay in hospital as it can solve the problem for several years. However, Myla was unlucky. Having sepsis, cholangitis and a chyle leak, the lymphatic vessels had become damaged and fluid leaking into nearby tissues had caused swelling. Just two weeks later, the procedure was declared a failure. At this point Myla’s liver had become too damaged and her only option was to have a transplant.
“When we had to spent so many months miles away from our home, with our baby so poorly, Eckersley House was the closest thing we had to a little bit of normality.”
Everything felt like it was happening so quickly. The doctors told us that without a transplant, Myla wouldn’t live to see her first birthday. Then that timeline was reduced to just six months. It was devastating. To make matters worse, Myla has a rare B positive blood type, which made finding a deceased donor unlikely. We had to focus on finding a living donor, further narrowing our options. Liam was tested but his artery was too short. Although I’m the same blood type as Myla, I couldn’t donate as I had just given birth. We felt helpless.
We appealed for help through the BBC and social media, and the response was overwhelming — over 480 people came forward. Amazingly, it was my best friend, Naedean, who ended up being the donor, saving my little girl’s life. We will never be able to repay her for what she done for Myla, she’s a true-life hero. Myla’s transplant took place on November 21, 2023, and she spent the next two months recovering.
Support from The Sick Children’s Trust at Christmas
During our time in Leeds, Eckersley House provided us with a place to stay close to the hospital. First, we stayed in a room while Myla was in the Paediatric Intensive Care Unit (PICU), and later, we moved to the transplant flat. This flat gave us the privacy we needed post-transplant, with a kitchen, living space, and bedroom where we could isolate, which was necessary as she was on immune suppressants to help her body accept the new liver. It was a such a valuable help for us in many ways, but importantly it provided a room for my mum, who was with us throughout it all. She was our support, and it gave us all a place to stay together. When we had to spent so many months miles away from our home, away from our family and dealing with something so devasting which was happening to our new born baby, Eckersley House was the closest thing we had to a little bit of normality. The ‘Home from Home’ made an enormous difference, and I truly don’t know what we would have done without it.
We spent Myla’s first Christmas at the hospital and at Eckersley House. Although it wasn’t how we imagined celebrating, we made the best of it. Some of my family came to visit, and we cooked dinner at Eckersley House, spending the day together while making sure one of us was always with Myla. The staff gave us presents for her, and we had our own special little Christmas.
Since her transplant, Myla has had a challenging journey. She suffered from RSV and septic shock, which led to a cardiac arrest shortly after her surgery. Thankfully, she was resuscitated and ventilated, but her airway was so narrow it was causing severe breathing difficulties. A series of procedures helped widen her airway, but she may still need surgery if it worsens again.
Since leaving hospital
After leaving the hospital, Myla was doing well for a while, but she now faces another battle. She has developed post-transplant lymphoproliferative disorder (PTLD), a condition caused by the immunosuppressants that can lead to cancerous cells in the lymph nodes. This put at her at risk of rejecting her new liver but thankfully adjustments to her medication has resolved this.
Most recently Myla needed a stent to be placed in her portal vein as it was completely blocked. Remarkably her body was able to create new blood vessels to continue supplying blood to her liver. We’re hoping to have a much bigger family Christmas this year, which we’ll celebrate as Myla’s first one, making it extra special.
Laura Duffey, Myla’s mum.
