Transplant had not entered my mind

Mum of four, Verity, describes the shock of being told that her previously healthy eight year old was suffering from liver failure. 

Albie is the youngest of my four boys and had always been healthy and active. He was part of a football team and enjoyed swimming. I first noticed something was wrong, however, in November 2021 when he came home having been out for the day and I saw the corners of his eyes were yellow. My  ‘mum instinct’ told me this wasn’t right. I spent the evening panicking and googling jaundice. The following day was Remembrance Sunday and we had gone to support his brothers in the parade. Albie was not at all himself, he was tired and seemed unable to make decisions. He barely ate anything, which was very unusual for him. His urine was very dark despite him drinking loads as he seemed extremely thirsty. The next day, I called the GP. She gave him a thorough examination, tested his urine and referred him urgently to the local hospital. We spent the rest of the day at the hospital, having various tests where they suspected viral hepatitis. He was discharged in the early hours of the morning with open access and to go back in a week for more blood tests. Just as we were leaving, he was violently sick.

 

Throughout that week, Albie deteriorated. His skin became jaundiced, he had no energy and wanted to sleep a lot. Most of the time when he tried to eat, he was sick. I called the hospital three times during that week and they told me it would take a good week for him to improve.

 

The following week I took him back to hospital for his blood tests. And after a few hours at the hospital, an extremely lethargic Albie was admitted onto the ward. The following morning, the consultant came to speak to me and said he would need to be transferred to Kings College Hospital in London, (four hours away from home) as they are the paediatric liver specialists. I already knew of Kings as my eldest son had gone there as a baby with prolonged jaundice, suspected Alagille syndrome, but turned out to be fine.

 

We spent a week in our local hospital having blood tests numerous times a day and waiting for a bed to become available at Kings so that Albie could have a liver biopsy. His  ultrasound showed an enlarged liver and spleen and he was given antibiotics, which we later discovered he was allergic to. His favourite thing to do was choosing what he would have for lunch and dinner on the menu, but he could never eat it and was usually sick when he tried. We had our own room which was nice, and he made friends with the seagull that would come and sit on the window sill!

At the weekend, Albie’s older brothers came to visit him which gave us a lift as it had been  so hard for both of us being away from them for a week. And the following week, a bed became available at Kings.  We were blue lighted to London in an ambulance, not as fast as they’d hoped as it started to snow on the motorway! As Albie slept, the paramedic chatted to me the whole way, his son was the same age as Albie and this had tugged on his heart strings.

 

Listed for transplant

 

We arrived late at night. Albie remembers that, as well as having blood tests as soon as he arrived, he was asked to draw a picture of his house. This would become a daily task for the next week! The following day, Albie was extremely tired, I thought from the late night and journey, but was worried as he didn’t appear to be his normal happy self. I alerted the doctors of my concerns. I was then taken into a room with the consultant and a professor, where they told me he may need to go to intensive care and that depending on how his blood results went, he may need to go on the list for a liver transplant.

 

I was in complete shock, I thought we were going for a biopsy and some magic medicine. Transplant had not entered my mind, for the next few days I didn’t allow it to either. During that time he had an ultrasound, MRI, an X-ray, and so many blood tests. Nothing was showing any answers. His body was covered in an awful itchy rash which turned out to be a reaction to the antibiotics.

 

Sadly, all the blood tests showed that his liver would not recover. Every time the doctors spoke to me, I just cried. It was so scary. On the Friday, I was taken out of Albie’s room to be told they were listing him for transplant. Albie had acute liver failure, which meant he would be at the top of the list; he was a common blood group and would likely receive his transplant within 72 hours. The professor told me that Albie would need to be put in an induced coma to protect his body from the toxins. I was in total shock and so frightened, but I also knew that I needed them to make my boy better, whatever that meant.

 

I explained to Albie his liver wasn’t getting better so they would take it out and give him a new one.

 

During the next day, Albie deteriorated so much. My usually placid boy was becoming angry and unsettled, the rash was causing him so much distress, he was in and out of sleep, could barely talk and was slurring his words.

 

I was sent away while Albie was taken to paediatric intensive care to be put in an induced coma. This was almost a relief as I knew he was safe. My parents had come up by this point and while I was with them I had a phone call to say they had a potential donor. I actually felt excited. The liver would arrive in the early hours and as long as it was suitable for him, he’d have his transplant the next day! I went back to see Albie in intensive care, he looked so peaceful as he slept, although a little scary with all the breathing tubes. I wasn’t allowed to stay with him overnight, but we had a room at Ronald McDonald, so I stayed there with my parents.

 

I went in to PICU the next morning in anticipation for the transplant. I was allowed to walk down to the operating theatre with him, I kissed him on the head and left a lipstick mark so I could be with him during his operation. It was a long six hours, they called me every two hours to update me on the progress and I panicked every time I got a call. When I got the call to say I could go and see him was such a huge relief! The surgeon explained that they’d been unable to preserve any of Albie’s own liver because it was too damaged, so he’d received a complete transplant.

 

Long road to recovery

 

It was amazing to see the effect of the surgery. Albie looked different already. His skin and hair looked almost normal colour and I could see his freckles again. He had a Mercedes shaped scar across his tummy and torso. He was kept asleep for another 24 hours. When he finally woke he spoke in a very quiet whisper to tell me he was hungry, but it would be five more days before he was allowed to eat.

Albie was moved to HDU and I was allowed to stay by his bedside again, and after a day he was moved back to the ward.

 

Albie was in hospital for another three weeks after his transplant. He struggled with eating, kept being sick and lost a stone in weight so he ended up with an NG tube. He was always wired up to machines for medication and monitoring, so moving around was difficult. He had to have physio in the hospital to help him sit up and then move into a chair. He’d lost all muscle tone from being in bed for weeks, but when he walked around his bed for the first time it was like watching him take his first steps again, very emotional!

 

Albie’s brothers had come up to stay in the Ronald McDonald house, so when Albie was no longer connected to all the machines 24 hours a day, he was allowed to go out in a wheelchair to see them. It was the best feeling.  We were all desperately hoping to be home in time for Christmas but Albie’s  liver levels were not quite where they’d hoped post transplant, so he had to have a liver biopsy. It was a very quick procedure, but having been told the risks, I was very scared, but knew he needed it.

 

Thankfully the results indicated things were moving in the right direction and when  were finally told the day before Christmas Eve, we would be able to go home, we were so happy and relieved!

Albie would need blood tests a week later at the local hospital and we had to go back to Kings two weeks later for a scan and review. It was an up and down recovery as he kept getting the CMV virus which meant horrible medicine and weekly blood tests. Blood tests were often difficult as they struggled to find a vein and when they did couldn’t always get enough blood in one go. This caused a great deal of anxiety and stress to Albie. The community nurse arranged for him to spend time with the play therapist before his blood tests which was a great help. She was really gentle and kind to him –  he’s always been very shy and she never pressured him into talking to her, they just did fun experiments and crafts together and she gave him an iPad to play on while he had the bloods taken. The blood clinic nurses got to know him as well, it is always a relief to see a familiar face!

 

Coping with new normal

 

I had seen a poster about CLDF while we were in Kings for Albie’s transplant and when we got home, I decided to make contact for support. I received a welcome pack and a lovely book for Albie called Joe’s Liver Transplant. Kate was available to talk to and she called me to discuss my concerns over Albie going back to school. As a single mum I had no one who really understood, so it was lovely to speak to someone that gave me reassurance and permission to feel the way I did. I talked through my plans of a phased return for him and she agreed that all sounded a sensible time frame. It made me feel so much better and less pressured.

 

The hardest part for Albie in those early post-transplant days was the volume of medication.  He had 11 lots of medication a day, plus high calorie milk to take every day. He always took it, it was never a battle to get him to take it as he knew he had to. But some of them tasted disgusting and made him feel sick. Some I had to crush and mix with food. He’ll never eat a chocolate mousse again! Thankfully over time he no longer needs to take so much. He now just has his immunosuppressants and steroids.

 

 

The community nurse referred Albie and myself for counselling at the hospital, but we decided during our sessions that it was me that needed it more than Albie at this stage. His sessions with the play therapist were really helpful and for now, he just generally seems to accept it all. He may need support in the future as he gets older and fully understands. My own sessions with the counsellor helped me come to terms with what had happened to Albie and to accept that life would always be different from now on. He will always have to take medication and have hospital trips and it may be a bumpy road at times.

 

One of the hardest parts of the whole experience for Albie and myself was being away from his brothers for so long. Albie is the youngest of four boys and it’s always just been the five of us. He’s extremely close to his big brothers as the baby of the family and they’ve always been very protective of him. It was so difficult, we video called every day, but sometimes it would be too emotional. We missed my eldest son’s 16th birthday while we were in hospital and that was tough on us all.  Since his transplant, they treat him as normal, playing and messing around with him. They look after him and let him get away with murder, but maybe that’s just that he’s the youngest! They are very proud of him. We enjoy being together as a family again.

 

Back to school

 

I was really reluctant to send Albie back to school, due to the high dose of immunosuppressant he was on, I was frightened of him catching any illnesses that would make his liver enzyme levels high again and risk the need for a biopsy. Finally after six months, he went back for afternoons only. We were both very anxious about it, but did a couple of taster sessions so he could see his friends again and this helped.

 

Albie is now back at school full time. He started middle school in September, he was initially going just for afternoons, but after the first week went full time because he wanted to do PE in the morning! He does rugby, football and dodgeball clubs after school. He’s joined a new football team at the weekend and is back to swimming lessons.  It was his tenth birthday on the day of the Coronation so it only seemed right that he should be King for a day!

This summer we went to our first British Transplant Games and he had a  great time! He got gold in tennis and bronze in football and swimming! It was exhausting but such an amazing experience and we can’t wait for next year! It was so lovely to meet so many amazing superhero children and their families.

 

Albie has also been joining in the CLDF hive meet-ups online for 9-10 year olds, which he’s really enjoyed. It’s great to see him playing games and chatting with other children his age who also have a liver condition or have had a transplant. It helps him realise he’s not alone in this situation.

Looking back on what we’ve been through there is no denying that it is a  shocking and terrifying experience. I cried every day. You just have to put all your faith and trust in the doctors, nurses and surgeons. They are experts and will look after your child. They’ll do whatever is necessary to make them better, although it’s a terrifying concept, have faith that they will recover and lead a normal life again. I would happily talk to any parent going through this if it helped them.