"Without our donor, Henry wouldn't be here" – Mum encourages everyone to ‘have the chat’ about organ donation
A grateful mum is passionately encouraging everyone to sign-up and have the chat about their organ donation wishes with loved ones after her one-year-old son, Henry, was given the Gift of Life at Birmingham Children’s Hospital.
Jen Halliwell has witnessed first-hand the awesome power of organ donation after Henry underwent a life-saving transplant operation after being diagnosed with biliary atresia - a rare disease of the bile ducts which can cause severe liver damage that occurs in around 1 in 17,000 births.
Mum, Jen, from Macclesfield, explained: "Henry was born in August 2022 at our local hospital and quickly developed newborn jaundice.
"It wasn't a worry at first, however at two weeks old, it had not gone away so Henry was sent for tests. They found that his direct bilirubin levels were extremely high.”
Shortly after, Henry was diagnosed with biliary atresia, which occurs when the ducts that carry bile from the liver to the gallbladder do not develop as expected and become blocked.
At three weeks old, Henry was transferred to Birmingham Children's Hospital’s Specialist Liver Unit.
Jen said: "He was quickly seen by lots of specialists and doctors. It was quite overwhelming. I was so upset and worried for Henry but the team really looked after us and explained everything that was happening."
At four weeks old, Henry underwent a Kasai procedure to help bile drain from the liver into the gut. Despite initial success, Henry’s jaundice returned, and he struggled to gain weight.
Jen explained: "His doctor’s decided that Henry needed to have a liver transplant and they put him on the waiting list.
"It felt like a very long wait, though in hindsight, we weren't waiting too long. We were just very anxious waiting for that phone call, which we knew we could receive at any time of the day.
"We eventually got the call that a liver was waiting for Henry."
Henry underwent the transplant procedure, which took the Children’s Hospital team of experts around seven hours, the very next day.
Jen added: "Within days of the operation taking place, we saw an improvement. We couldn't believe it was working so quickly. We just felt so grateful to the team and the person who donated their liver."
Thankfully Henry is now back with his Mum and Dad Andy at home and thriving.
Jen said: "We really can't thank the team enough. They have been incredible. We see them as part of our family. Everyone has been really supportive and we are just so thankful. We have also made many good friends who are going through the same thing with their babies on the ward.
"Thanks to the team and our donor, we took Henry on his first-ever family holiday recently, something that we used to take for granted but is now so precious to us.
"We are just so grateful to our donor. It's such a selfless thing for them and their family to do. Without our donor, Henry wouldn't be here. Thanks to them, he is happy and living as a one-year-old should.
"We just really encourage everyone to have the chat about organ donation with your loved ones so they know your choices. It's so important they know as they can overturn your decision. That conversation could save someone's life, just like Henry’s."
Kylie Martin, Liver Nurse Specialist at Birmingham Children’s Hospital, praised Henry’s resilience: “Henry is an amazing young boy who has fought through a lot of struggles throughout his diagnosis. To see him now with his smile and character lights up our day.
“Both Jen and Andy have shown remarkable resilience throughout every step of his transplant journey. It has been a privilege to be part of their story.”
“Their story is one of many and just goes to show the incredible difference organ donation makes. We urge everyone to tell their loved ones their organ donation wishes and help us save precious lives.”
Each year, the expert Liver team carry out around 30 liver transplant operations – all only made possible by donors willing to give someone else the Gift of Life.
There are currently over 7600 people in the UK waiting for a transplant. A two minute conversation could save up to nine lives.
To sign-up and for advice on how to leave your loved ones certain of your wishes to be a donor visit www.organdonation.nhs.uk