Ava is now an active 11 year old, a devoted St Mirren fan, who is off to high school in August. But she had a very difficult start, as mum, Ashley explains.
Ava was born at 37 weeks. She had the usual baby jaundice which went away but it wasn’t until she was a few weeks old I noticed her stools pale and urine dark . She seemed to become jaundiced again and when the health visitor called to see her, she agreed with me and referred her to our local hospital, Yorkhill, for blood tests. I’m so glad she did.
The blood tests indicated there could be a problem with Ava’s liver and after a week in Yorkhill undergoing several tests, we were sent to the paediatric liver unit at Leeds General Infirmary. This was over 200 miles from our home in Paisley – nothing like how we imagined things to be with our first baby – but we had no choice.
Once there, tests confirmed that Ava had the rare liver disease, biliary atresia. She underwent a Kasai procedure – an eight-hour operation – when she was seven weeks old, and it seemed initially that it had been successful. We were so relieved to be going home.
Within a few months, however, her liver function started to deteriorate, she was losing weight and became very jaundiced again. In April 2013, aged just six months, Ava was assessed and placed on the transplant list.
We knew that time was of the essence and also that there is a shortage of organ donors so Ava’s dad, James, put himself forward to be a donor and passed all the necessary tests. After just 36 days including two false calls, however, a liver from a deceased donor proved to be a match. It meant that Ava’s dad could have his live donation cancelled on the morning he was due to undergo surgery.
Although the transplant operation went well, Ava had rejection of her liver a week later but the amazing team in Leeds got this under control with extra immunosuppressants and steroids. After five weeks in Leeds after Ava’s transplant we could finally go home. And although it was great to be home, this came with a whole new way of life. It meant regular hospital trips, weekly bloods for almost a year, and constant battles with infection and rejection . Ava also needed speech therapists, physios and other support to help her catch up on the key milestones she’d missed such as eating, talking and movement. The impact, both financially and mentally, was really hard going.
CLDF provided us with support in the early days by meet ups at clinics and family days and then over the years with information to help support Ava at nursery and school. I’d advise any other parents to take any support they can access.
Fast forward to today and we still attend clinic appointments and battle the infections that come along but Ava deals with it all well and it’s fair to say that she is thriving. She has had a lot of anxiety due to her past treatments but the team at Glasgow, including psychologists and play therapists have always been there to help. She is a creative social girl with a lot of empathy for others. Her amazing consultant nominated her for the dream flight to Florida this year, and she has been chosen to go in October. She is so excited!
To other parents in our situation, I would say yes, it is very stressful dealing with hospitals and watching your child unwell so it’s important to take care of yourselves too. And reach out for support when you need it. You’ll be glad you did.
