Bethany Salmon • Life Stories • LLTGL

Bethany is 5 years old and has had liver complications since she was born. She has just been listed for a liver transplant.

When Bethany was born we had no inkling that anything was wrong. She was diagnosed with jaundice which everyone assumed would go away within a few days. When she was 13 days old we were sent to our local hospital for jaundice tests and our roller coaster journey began. We were sent to St James Paediatric Liver Unit for more tests and were told that Bethany had one of about five different disorders, all of which needed a transplant and possibly straight away with a short life expectancy. We immediately bought a camera to make sure we had lots of memories of her in case we didn’t get to enjoy her for long.

A couple of weeks later Bethany was diagnosed with PFIC2 – Progressive Familial Intrahepatic Cholestasis type II. She would definitely need a liver transplant but at least not immediately.

Her first year was traumatic with lots of ups and downs and complications. Her little body struggled to regulate itself and absorb anything – medication and food. She had an NG tube through which we gave her 23 doses of medication and milk and during the night it was used to feed her as she was attached to a feed pump.

After the first year Bethany’s health started to stabilise. She had so many health-related issues that it took a while to sink in that we were enjoying more time at home. She had major social issues and would scream if friends visited the house or anyone approached her when we were out. This led to us mainly staying at home without visitors.

Starting nursery was traumatic for Bethany. For the first six months she needed a parent with her and it took a long time for her to get accustomed to having other children and adults around her. She started going to dancing class to help with mobility problems as she had an unusual gait due to an enlarged abdomen and fell down regularly.

Bethany is five years old now. She still attends dancing class and, despite still having limited mobility, joins in with dancing competitions and has her first dancing exam coming up shortly. She is enthusiastic about school even though she exhausts easily and is often upset in the second half of the school day due to lethargy. We are currently looking into Bethany attending half days or having regular breaks during the school day.

We recently spent a week in hospital for a transplant assessment. Bethany had many scans and tests over the five days. By the end of the week we had received the news that doctors had found a lesion on Bethany’s liver and the assessment took on a different air as her situation and need for listing became more urgent. It came as a great shock and took a while to recover from. It helped a lot to have a great circle of friends who were there for us to talk to and lean on. Preliminary MRI scan results show that Bethany has pre-cancerous cells in her liver. She has been listed for a liver transplant.

It’s hard waiting for ‘the call’. We can’t plan ahead and we live with bags at the front door as a reminder that at any moment our lives will be turned upside down. But I can’t wait until we get the call. I can’t wait for the first day of the rest of Bethany’s life. She has to have painful injections every three weeks, is exhausted on a daily basis and often can’t sleep through the night due to pain. But you won’t find a happier, more enthusiastic child than Bethany; she really is a hero in my eyes and takes every horrible detail about liver disease in her stride. If anyone asks her about her liver she will tell them, “I have a poorly liver and take medicine to keep it happy until I get my new liver.” She is looking forward to a time when she isn’t exhausted and doesn’t need to take lots of medications and have painful injections. With all of my heart and all of my soul I hope she gets her wish.