Thomas O'Brien
At just 3 months old, Thomas O’Brien was suffering with chronic diarrhoea and had lost a considerable amount of weight. He was admitted to Children’s Health Ireland at Temple Street where he was diagnosed with Byler’s Disease. He was then transferred to the Gastroenterology and Hepatology Team in Children’s Health Ireland (CHI) at Crumlin.
Byler’s disease is a condition in which liver cells do not release a digestive fluid, called bile, properly. This leads to a build-up of bile inside the liver cells known as cholestasis whose side effects can include jaundice, itching and impaired growth. Without treatment, the liver can become severely diseased and lead to liver failure before adulthood. Thomas’ condition is genetic one and has affected a number of his family members. Sadly, four members of his family have passed away and four more have the same condition, three of whom have had transplants already.
When Thomas was transferred to CHI at Crumlin, a drain was inserted to divert the bile outside the body (a biliary drainage bag) to help control this internal itch. He also had a PEG feeding tube inserted to help build up his nutrition and he remained in hospital as an inpatient for the first few months of his life.
By 9 years old, both Thomas’ skin and eyes had turned yellow and he developed an appalling internal itch as his disease progressed. He could be found on a regular basis in any room in the house or on the carpet as he tried to alleviate the itching by scratching off a door or the carpet. He rarely had a full night’s sleep and even found wearing clothes difficult as it restricted his ability to itch. He regularly arrived for appointment to CHI at Crumlin just wearing a sheet such was the distress he would be in.
Thomas spent the first 14 years of his life attending CHI at Crumlin sometimes 2-3 times per week for bloods and treatment. At 14, despite his parent’s reluctance, Thomas decided he wanted to go on the transplant list for a new liver. Then, as now, liver transplants are not carried out in Ireland on children, so he and his family had to travel to King’s College Hospital, London. There, he was assessed by the Liver team for transplant and went on the waiting list for a new liver in January 2021, hoping to eventually get a call that they had found a liver for him.
He also started on a research trial for a new drug that would hopefully help manage his itch. Travelling to London was a necessary regular occurrence and Thomas and his parents would have to go for days at a time. That brought so much mental, physical and financial stress to Thomas’ family, as it does for so many other families with liver conditions.
Thomas’ mam, Helen says “There is no place like Crumlin. King’s College Hospital is great and does wonderful work, but everything is faster, and no one has time to allay your worries. But in CHI at Crumlin, whether in person or on the end of a phone, everyone has time to answer your questions or give you advice.”
Thomas and his family spent 15 months waiting for ‘that call’ while his liver condition continued to deteriorate. On the 24th April of 2022 at 5.30am, Thomas got ‘that call’ from the transplant team to say they had a liver and were hopeful that it would fit. Thomas and his parents were taken straight to Dublin Airport where they got a helicopter to London. Thomas’ operation lasted 12 hours, he spent 2 days in ICU and 4 weeks on the Ray of Sunshine ward at Kings College Hospital which specialises in treating children with liver conditions.
On the 25th May, he was allowed home to Wicklow where he has continued to go from strength to strength. After 7 years of being Peg fed, Thomas was finally able to eat food and started off with a slice of apple and a Petit Filou! He now attends CHI at Crumlin monthly for follow up monitoring.
Amy Power, Hepatology Clinical Nurse Specialist says ‘With Thomas’s condition, it is really important we monitor him closely for any fatty changes in his liver. To date patients undergo a liver biopsy to get this information, which involves a general anesthetic and a minimum of 2-night stay in hospital along with other risks associated with liver biopsy. We now have a FibroScan in CHI at Crumlin, with very many thanks to all the wonderful fundraising done by Children’s Health Foundation. A FibroScan uses ultrasound technology to assess stiffness of the liver and can detect any fatty changes within the liver. This technology gives us a lot of information about our patient’s livers and it is a quick, non-invasive intervention done at the bedside or in our outpatient appointments with immediate results.’
Helen says “This is a cruel disease which destroys lives. We will forever be grateful to Dr Emer Fitzpatrick and all the wonderful Liver Nurses in Crumlin. They have given Thomas his life back and the new machines they use and need will save so many other families the many traumas that we as a family had to go through on our journey”
Clash of the Companies 2023
Can your company handle the Clash Challenge and help sick children like Thomas?
Clash of the Companies is the highly popular and unique team building fundraiser in the Corporate Calendar. Gather your colleagues (teams of 8) and sign up for a space themed treasure hunt solving clues and taking part in physical challenges on the streets of Dublin on Friday 7th July. Starting at the RDS, this wonderful event will provide you with fun and laughter while helping support sick children.
All donations received will help fund life-saving equipment and care for our little patients. We will ensure that your money goes towards the purchase of essential equipment in our theatres, wards and patient services for seriously ill children in our Children’s Health Ireland hospitals and urgent care centres.
