Parents look forward to Myla's first Christmas at Denny home after baby's liver transplant

Little Myla Duffey was only a few months old when she underwent the operation to replace her failing liver.

In the coming weeks her frantic parents, Laura and Liam, stayed by their baby’s side in a Leeds hospital, hundreds of miles away from family and friends.

During the most trying days they had to look on as medics battled to save their little one as she went into cardiac arrest and had sepsis.

But the battling tot is now recovering at their Denny home – and they’ve vowed to make this Christmas extra special.

Lauren, who runs LD Dance Academy in Larbert, tells how the joy of their baby’s birth was turned upside down in August 2023 when Myla was just five weeks old.

She said: “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 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.”

Following the Kasai operation, her parents were hoping that Myla wouldn’t have a long stay in hospital as it can solve the problem for several years. However, she was unlucky.

Laura added: “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.

“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.”

The couple were devastated by the news and also knowing that Myla has a rare B positive blood type, which made finding a deceased donor unlikely.

They then began to focus on finding a living donor, further narrowing their options.

"Liam was tested but his artery was too short,” said Laura. “Although I’m the same blood type as Myla, I couldn’t donate as I had just given birth. We felt helpless.”

However, a social media appeal saw over 480 people came forward. Amazingly, it was Laura’s best friend, Naedean, who ended up being the donor, saving her 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 last year and she spent the next two months recovering with her parents again having care from Eckersley House in a transplant flat.

Laura explained: “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 devastating which was happening to our new born baby, Eckersley House was the closest thing we had to a little bit of normality. It made an enormous difference, and I truly don’t know what we would have done without it.”

They spent Myla’s first Christmas at the hospital and at Eckersley House with some family visiting and they cooked dinner at Eckersley House, spending the day together while making sure one of them was always with Myla.

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,” added her mum. “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.

"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.”