It was going to take six weeks to assess a suitable donor for a liver transplant for our eight month old daughter, Aria, but she didn’t have six weeks left.
This wasn’t the first time we’d been told that our daughter was likely to die.
Aria was born in January 2020, four weeks premature with jaundice. We didn’t know at the time but we soon found out the cause for the jaundice was because she had an issue with her liver. Aria was diagnosed with a condition called biliary atresia, a blockage in the tubes that carry bile from the liver to the gallbladder, which required surgery.
At 19 days old she was flown from Glasgow’s Royal Hospital for Children to Leeds Children’s Hospital for major surgery to connect her liver to the small intestine. Autumn and I left our son, Edan, at home with his grandparents so we could both go to Leeds to be with our daughter. A few days before this operation was booked to take place, Aria needed lifesaving emergency surgery on a blocked bowel, without which she wouldn’t have made it through the night.
At Leeds, we were given a room just off the corridor on the opposite side of the hospital. While we were so grateful to be able to have somewhere we could lie down, we still felt on edge. The room was very small and cramped and we struggled to sleep due to the usual hospital noises.
“Autumn would come back from the hospital to Eckersley House every evening and I would be there to comfort her.”
After a few days of staying in Leeds we were starting to run out of clean clothes. The nurses on the ward suggested that we could ask Eckersley House run by The Sick Children’s Trust, just across the road from the hospital, if we could use the laundry room. Eckersley House supports families by giving them a place to stay free of charge while their child is in hospital. The 22 bedrooms are often full, but they allow parents like us to use the laundry room and kitchen to just help ease the burden. When we met Jane, the House Manager, she told us that a room had just become available and since we were so far from home we were given priority and were instantly given keys to our ‘Home from Home’. As she showed us around the kitchen, living room and to our bedroom we felt a huge relief.
Eckersley House gave us the chance to both get some rest and remain close to Aria, and it has become a big part of our lives. We’ve been back to Leeds a few more times with Aria and knowing that there is a familiar face at Eckersley House puts us at ease. The great thing about Eckersley House is it feels like it’s your home and you can come and go as you please, but you know there is someone there like Jane to give advice, listen and talk to. This was particularly important on our second admission as the national lockdown happened. Both Autumn and I were in Leeds, but restrictions were introduced in the hospital for health and safety and only one parent could be with their child. For ten days I stayed in Eckersley House while Autumn was just a few minutes away with Aria. The challenge was knowing I was so close to my partner and daughter but couldn’t be there to support them. It was a really tense time as Aria was at her worst at that point, however it was eased by having Eckersley House because Autumn would come back from the hospital every evening and I would be there to comfort her.
“The great thing about Eckersley House is it feels like it’s your home and you can come and go as you please, but you know there is someone there like Jane to give advice, listen and talk to.”
The next time we needed Eckersley House came out of the blue. Aria had gradually been getting much better and we were about to get her home for a few days every week. Suddenly overnight she became extremely unwell and her only hope was a liver transplant. She was flown to Leeds while I was still packing a suitcase. I had to leave Autumn and Edan the next morning to go to Leeds to see if I would be a suitable donor. It looked hopeful, but soon came the devastating news that my liver was too big for her little body. I called Autumn and she caught the next train down to see if she would be suitable. Thankfully she was.
It took 12 hours to remove the piece of liver from Autumn and transplant it into Aria. I split myself between St James’s hospital in Leeds where Autumn was and Leeds Children’s Hospital where Aria was, so I could be there for my incredible family who were going through so much. The transplant went well, but Aria was kept under sedation for a further 15 days as her body got some much- needed rest. Aria does everything in extremes and was unable to come off the ventilator she had been on for over two weeks, this led to her needing a tracheostomy inserted. She spent a total of 63 days in Leeds intensive care unit before returning to Glasgow hospital at the start of December.
Over the last year we have been back and forth between Glasgow and Leeds for Aria’s hospital treatment, spending only 61 days out of hospital in over a year. She is a unique little girl but despite all she’s been through and the multiple scars on her body she couldn’t care less. She still smiles away and loves being around all the nurses.
We expect more surgery this year, but she is almost well enough to have a few hours at home every day where she can finally get cuddles with Edan after a long five months. Aria’s journey is uncertain and it is scary at times but so long as our family are together, we can get through it.
Ryan Gowran and Autumn Cayzer, Edan and Aria’s parents
