James who is now 4 years old received a liver transplant over three years ago thanks to a courageous family agreeing to donation. James’ daddy Danny shares their story:
“James was born at 09:53 on 17th July 2019 at Bolton hospital. He was born at 34+0 weeks and weighed 4lb 14oz. The next 17 days was spent in Special Care at Bolton Hospital, and during this period James spent 36-48 hours under the jaundice lamp which we were told was quite normal in premature babies. Once we eventually came home, we had outreach neo and community nurses out to us to keep track of James’s progress.
On 16 September James received his first lot of injections with nurse. Four days later Becci attended a baby sensory class with James and another mother commented on James’s colour in comparison to her child. Others agreed including Becci’s mother who had previous experience with a jaundice baby. So an appointment to see the GP the day after was made. This appointment resulted in being referred to Dr Ian Freeman on F5 at Bolton Hospital. We arrived at Bolton F5 for bloods and then went onto an ultrasound scan, which is where we learned about conjugated and unconjugated bilirubin.
We got told we would be being referred to Leeds Children’s Hospital for more testing and more advanced ultrasounds. This is when we first learned about Biliary Atresia (BA).
A week on from James having his jabs we arrived in Leeds General Infirmary not really knowing what was going on. Over the next few days they ran tests and had more detailed ultrasounds. All of the nurses & doctors were fantastic. We got told they would do an investigatory surgery to determine whether it was BA or Alagille’s syndrome as that runs on Becci’s side of the family.
Our 10 weeks old baby boy went for investigatory surgery which lead to a Kasai operation being carried out. The surgery was 7 hours long, and we were then given all of the odds of surgery working as well as subject of organ transplantation being brought to our attention. Over the next 7 days James’s recovery went well and we learnt about the new medication & we returned home.
We had noticed James’s stomach was larger than normal and wasn’t taking his full bottle like he normally does; so we contacted the liver nurse Matthew Hick who advised us to go straight to F5 and he would contact them to tell them that we were on route. We then spent the next 8 days in Bolton before being transferred to Leeds children’s hospital for a clinic appointment. We were given the gut wrenching news that due to James’s asities that its more than likely he would need a liver transplant soon as the Kasai operation was unsuccessful in correcting his bile flow.
We spent from November 26th to January 8th living in Leeds hospital as a family which included James’s first Christmas. We had a week of pre transplant assessment in the middle of December, which included meeting surgeons, pharmacists, social workers and a psychiatrist. We were given all the information that they could give us for when we went on the transplant list and eventually get the phone call.
On Christmas Eve 2019 our beautiful baby boy went live on the liver transplant list. Over the Christmas period Becci set up a fundraiser on social media for the Children’s Liver Disease Foundation which eventually reached a total of £5,265.00.
On. January 7th James was fitted with a broviac line for his medication and the following day James was well enough to go back to Bolton hospital which was a stepping stone to getting home. In the middle of January I went for testing to see if I could potentially become a donor for James, I was a match but unfortunately James wasn’t quite big enough to accept the portion of liver required.
By the end of January James was eventually home after a total of 68 days as an inpatient at Bolton then to Leeds then back to Bolton. We had community nurses coming out administering his IV medication which was amazing but we were still waiting for a liver.
On Monday 5th February James wasn’t himself at all, very whiny and irritable and just wouldn’t settle. So we went into Bolton Hospital early the next day & they told us he had an infection going on somewhere in his body and antibiotics was started immediately. We got transferred back to Leeds Hospital late on Tuesday night and the next day to our shock James was diagnosed with sepsis. We found out Wednesday lunch to our shock that James had sepsis.
Four days later we were told that James was too poorly to be at home and had to remain living in hospital until the transplant came. Because of how poorly James was when he had sepsis we made the decision to put out a plea to look for a liver which we did on social media. The response we had was phenomenal. We got 6.7k shares and 1.5k comments of people offering support and also to be tested to see if they were a match. We eventually made the decision to move hospitals back to Bolton hospital because I was still working and Becci and James would have a lot more support from friends and family in Bolton.
However around a month later we got the call to say a liver had come in that might be suitable for James. James had a liver transplant after spending a total of 73 days on the transplant list. James spent 6 days in PICU and 3 days in HDU before returning to ward 50 in Leeds children’s hospital.
James had a few hurdles during his recovery with infections etc and also coronavirus hit the nation and the hospital implemented a 1 resident parent only rule due to Covid 19, which meant I had to leave my wife and son in Leeds hospital and come home and couldn’t see him until ready to come home.
James and Becci spent a further 5 weeks in hospital and I had to be at home. Over the 5 weeks James had a lot of tests and ultrasounds to make sure the liver was taking and working correctly. At the end of April 2020 James was finally allowed home, almost 8 weeks after transplant.
In June 2020 James became very unwell and he was rushed into hospital where he was treated for suspected sepsis. Blood culture results indicated this would have turned into sepsis. Just shows how careful we have to be with James as he can become very unwell very quickly!
In the first year of life James spent a total of 209 days and nights in hospital with one of his parents with him at all times.
Three years ago, it never entered our heads about the world of families that have poorly babies and children. Sure, you know it exists but it doesn’t happen to you and it doesn’t happen to anyone you know. But it does and it happened to us and it happened to someone that you know.
There are children that spend their ‘firsts’ in hospital……….
First time seeing Santa
First Christmas
First Easter
First time trying solids
First mother’s day
First father’s day
First parents birthdays as parents
First teeth
All the monthly milestone pictures.
All these ‘firsts’ we spent with James in hospital.
Over 3 years have now passed since we received the amazing gift of a liver that saved our baby boy’s life and we think of our donor every second of every day because js is thanks to James’s donor and their family we get to see James grow up.
James is doing really well. He is a perfectly happy little boy and started pre-school September 2022 and continues to absolutely loving and where he continues to thrive. It is amazing. Both Becci and I were two of the proudest parents in the world when he started school. He is just a really happy boy which is fantastic.
Last year we joined many others at The British Transplant Games in Leeds, and this year we were in Coventry as part of #TeamLeeds. It really is an an amazing experience especially taking part in the Donor Run. Roll on Nottingham next year. All made possible by organ donation. A gift that definitely keeps on giving.
We have made contact with some amazing people around the world that have and are in the same position and they’re all amazing beautiful people James amazes us every single day and we are so blessed to have him and we count ourselves the luckiest parents in the world.
There are no words to thank ALL of the staff enough at both Bolton Royal Hospital and Leeds Children hospital, they have all been amazing and I don’t think we would be the people we are today without them, they saved our baby boy’s life and we are eternally grateful.
It’s an absolute fact that without the NHS and organ donors our amazing beautiful baby boy wouldn’t be here today. We will be eternally grateful to the donor and their family and will never ever forget them and the gift they have given our James.”
