Thomas from Portadown in Northern Ireland who was born in March 2017 was just eight days old when his GP referred him to hospital with a slight heart murmur.
“When the hospital did blood tests, they could see that there was a problem with his liver but he also had sepsis” explains Thomas’ dad David. “The next day we were transferred by air ambulance to Birmingham Children’s Hospital where they successfully treated the sepsis but confirmed that he had biliary atresia, a rare and life threatening liver disease.”
It was while David was in hospital with Thomas that he first encountered Children’s Liver Disease Foundation. “The staff would come into the hospital, talk to the parents and patients (if they were old enough). They would bring in cakes and get anything that was needed. It sounds like a very simple thing, but when you have been living on the ward for an extended period any glimpse of reality helps.”
Even after Thomas was discharged from Birmingham Children’s Hospital, the next few months were tough on the whole family as Thomas’ condition did not improve and there were several trips both to their local hospital and to Belfast Children’s Hospital.
On September 24 Thomas was admitted to Birmingham Children’s Hospital once more and his family were told that a liver transplant was his only option. Fortunately he did not have to wait long for a donor liver to become available and received his transplant in early October. After two weeks he was able to come home and happily he has continued to thrive since. Throughout their experiences Thomas’ family has found CLDF’s support extremely valuable.
Thomas with his elder sisters and brother
“As well as visiting us in hospital, CLDF organise events here in Northern Ireland which the whole family can attend” says David. “It means Thomas’ elder sisters and brother can meet others who have been through the same experience of having their parents away for extended periods while their sibling has major surgery. I always feel it is the other children that suffer privately and these events really help as they know they are not the only ones who have been through this separation.
“Medical staff do a wonderful job and take care of the patient’s every need but having someone to talk to, having a cup of coffee and a bun handed to you can turn a very stressful and unbearable situation into something that can be coped with and this is where CLDF come in. The simple act of friendship from someone who has time and knowledge to explain something is more important than anyone can imagine.”
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