
This Christmas is going to be a very special one for Beckie, her husband Andrew and their two children. Last year’s was spent in hospital as daughter, Eleri was too poorly to go home. Beckie tells her story here.
Eleri, our second child, was born on 9th April 2021. She was a really unsettled and uncomfortable baby as soon as we got her home; she had terrible tummy pain, and constant diarrhoea and sickness. When she was just five days old, our health visitor referred us back to the hospital where she had blood tests and was monitored for 24 hours.
Despite being obviously poorly, at the time Eleri didn’t show any obvious signs of liver disease. She wasn’t particularly jaundiced, her stool colours were fine and her bloods were also not alarming so we were sent home with 24 hour open access if needed. We had regular checks ups from our health visitor and during that time, Eleri slowly became more jaundiced but, as a breastfed baby, we weren’t overly worried about that – her brother had been the same. I was told to cut all dairy from my diet, and we were looking at the possibility that she had reflux like her brother. But she was just getting more uncomfortable and the jaundice wasn’t going, so after two weeks we ended up back in hospital for another week, during which the consultants worked with Birmingham Children’s Hospital liver unit due to some small changes in Eleri’s blood tests. Again the ultrasounds and scans she had during that week weren’t worrying and we were sent home, with Birmingham requesting weekly bloods at our local.
Surprise diagnosis
A few weeks later, Eleri was still struggling, and a lovely doctor, Marcia, called us back to our local hospital. She had done some heart scans on Eleri and was really concerned we were still at home and not having more than just blood tests as there were no signs of improvement even with some medication. At this point, the beginning of June, we were transferred to Birmingham. We will forever be grateful to Doctor Marcia for really advocating for Eleri, we owe her so much!
The doctors in Birmingham weren’t 100% on Eleri’s diagnosis; she had lots of tests and a few scans showed bile flow issues so the decision was made to go ahead with surgery. We were told it could be that she just needed her system flushed, or it could be biliary atresia, in which case she would need the Kasai procedure. She had her operation at exactly nine weeks old and I think it came as a surprise to everyone that she had biliary atresia.
Unfortunately the Kasai was not successful and over the next few months it was clear that Eleri’s liver was not functioning as it should. The next 11 months involved many admissions both to our local hospital and to Birmingham and by May 2022 she was being assessed for liver transplant. As she was still developing well at that point, however, the doctors wanted her to get a little bigger before being listed and also receive all her vaccines including the chicken pox vaccine. By the time we got to last December, however, she was becoming really unwell and on December 6, she was put on the transplant list.
Christmas in hospital
Shortly after Eleri was listed, we attended a routine appointment at our Wales outreach clinic which our consultant would come to Cardiff every quarter to run. It so happened that Eleri’s ascites had gone from nowhere to becoming so unmanageable that she needed an albumin transfusion that day. At first we were told we could go home that evening, but that turned into overnight which turned into two weeks, which meant Christmas in hospital.

Eleri was only 19 months old so didn’t really understand much. But I felt awful for our son, Harri, who was just 3. Before, Eleri was born, we had never been apart from him so the sudden disruption to his world had been heartbreaking. We are very lucky to have a strong family support network with both our parents and siblings. My mam had spent a lot of time with me and Harri at home to help with Eleri as Andrew works shifts, so Harri had a familiar and constant support there. He would stay with my parents when we were in for extended stays, and both Grandparents and my brother would bring Harri to Cardiff over Christmas and later on travelled from South Wales to Birmingham regularly so that Harri could spend time with us.
It was particularly hard, however, knowing that we would be away from Harri at such a special time of year. We had Christmas plans that needed to be cancelled, and missed some of his first year in school activities. But we knew we had no choice. He was being wonderfully cared for by his Grandparents and we tried to stay as positive as possible and make sure neither of the children felt upset or like they were missing out.
And Noah’s Ark Hospital was incredible, Christmas really was made as special as it could be in the circumstances. Eleri was spoilt by all the nurses and had lots of gifts that were donated to the charity; we made cards for family and they even had a Christmas silent disco that we could take part in from our room. Both Harri and Eleri loved it and it made such a difference to the stay.

Santa had left Harri a note to say he would come back to our house when we were all at home together. We actually had to delay him twice as two days after we were discharged from Noah’s Ark, we had a call to say there was a potential donor for Eleri and we had to rush to Birmingham. It turned out not to be a match and so after a couple of days in Birmingham we got home on New Years Eve and had our family Christmas in January.

Transplant
We had a week at home after the first call for transplant, but Eleri deteriorated quickly and we were back to Noah’s Ark for a few nights before being transferred to Birmingham permanently. While we were there we had two other potential matches, before getting the fourth call which was her match and she had her transplant in February this year.
The difference is incredible. Eleri has always been a really happy and fun little girl, and she is that and some now. She has so much energy and is thriving! She is the cheekiest and most determined little girl. She and Harri have the sweetest relationship and just love playing together, it is everything to see them enjoying life together in a way which just wasn’t possible before. Harri has been incredible about it all. He’s had a lot to contend with but takes it all in his stride. He loves looking after Eleri; when she has appointments he wants to come with us so he can hold her hand and keep her safe. He is only four and amazes us with his empathy for what is going on!

CLDF support
We first heard about CLDF on our first admission to Birmingham before Eleri’s Kasai. With all the Covid restrictions at the time it wasn’t as easy to have open and long conversations with the nurses and consultants so the information we had that CLDF produces was a huge help. We shared the leaflets and articles on the website with our family and it really helped us to explain what was going on with Eleri. And the Stepping Stones pack for transplant information has been invaluable.
We also have a copy of ‘Joe’s Liver Transplant Story’ which we have read to Eleri and Harri and it really helped Harri understand what is happening with his sister. Anytime Eleri goes to hospital he asks to read it so he can help her.
The stories and articles that CLDF share are a huge source of comfort as well. It’s great to know that we are part of this amazing larger community. We like hearing other people’s stories and really hope that other families will now find ours helpful.
Now Eleri is doing well we can look back and can see that the lead up and months after transplant were so hard, being far away from home and our families, living with the fear of not knowing what was going to happen. We really leant on the people around us and built lovely relationships with a lot of the nurses on Ward 8 who boosted us every day, and we found our biliary atresia family whilst we were there, families in exactly the same circumstances as us, who are still a constant source of support, and will be lifelong friends.

So we have many reasons for making this Christmas special! It will be the first one without a cloud lingering over our heads. We will have our families over and just have a really close family Christmas. We’re very hopeful that Santa won’t need to leave any apologetic notes to Harri and Eleri this year and we can go all out on decorating and spoiling them both!
Thank you for sharing, what an inspiration your family is for other families like mine who have a child with liver disease. Wishing you all the best. Katie.