The Leeds Teaching Hospitals NHS Trust

Celebrating the gift of live organ donation

14 October 2019

On 24th January 2008, live organ donor, Carol Morris, 69, from Halifax, West Yorkshire, gave the gift of life and saved her only Granddaughter, Farah, who was just 10 months old at the time.

At five weeks old, Huddersfield born Farah was diagnosed with biliary atresia, a rare disease affecting newborns. Newborns appear normal at birth but soon become severely jaundiced. The liver’s drainage system for bile is abnormal and bile accumulates in the liver destroying liver cells, producing scarring and cirrhosis. It is fatal if left untreated. At six weeks old Farah had a Kasai operation to divert the bile out of the liver. Sadly, Farah was one of the 75% of Biliary atresia sufferers who needed a transplant despite the Kasai operation.

When told by consultants at Leeds St James's Hospital that her daughter was in need of a transplant in order to survive, Farah’s mother Joanna Bycroft 48, said “I asked the consultants ‘Am I going to lose her?’ and they said they would do everything they could to save Farah.”

As Farah’s condition deteriorated, the family were given the option of a live transplant, which meant Farah could receive a liver from a living person.

Farah’s Grandmother, Carol said: “The living donor needed to have the same blood type as Farah, and so three of our family members offered to be tested. I have always been a registered organ donor and given blood, but in this situation, I didn’t think I could put myself forward due to my age.”

“When it was established that none of the family were a match for Farah, I spoke with my husband about getting tested and he was 100% supportive of my decision – I knew it was the right thing to do and because the medical team took me through every detail, I had the confidence to go ahead.”

Farah2Over a two-and-a-half-month period Carol underwent tests to prepare for the live transplant. The evening before the operation, the hospital found a deceased liver donor: “It was decided by the consultants that the cadaveric liver would not be suitable for Farah”, she explains. “This was a relief for me as I was determined to help Farah.”

When remembering the first time she saw Farah after the operation in January 2008, Carol said: “She was sat up, with the biggest smile and brown eyes, and at that moment I knew it had all been worth it!”

Twelve years on Farah leads a healthy, happy life and Carol couldn’t be prouder: “I am so grateful that it was possible for me to be a live donor and give Farah the gift of life. It’s made such a difference because she can live a relatively normal life and stay educated on how to look after her liver as she grows up.  

“Farah will be on medication for the rest of her life, but that is a small price to pay to have her here with us. With the continued support from all the staff at Leeds Children’s Hospital, Farah and other children who have had transplants will be forever indebted.”

Farah’s mother, Joanna, added: “In the early days, there were a lot of hospital trips but now it’s very much a normal life, with Farah only having check-ups twice-a-year. We’ve got on with life which is the advice we received from the start. Farah is a joy of a young lady, and as she approaches her teenage years, she is getting more independent.”

Carol now lives in South Yorkshire, while Farah and Joanna are in Norfolk. Even though they don’t see each other every day, the special bond between Grandmother and Granddaughter is clear. Carol said: “We have a very precious relationship. We always text, FaceTime and do everything together when we can – Farah is learning to play the piano and my husband, Steve, is helping to teach her to play the guitar, we make lovely memories like going on holidays and just doing things together.”

Organ donation has the power to enable someone to carry on living, and both living related donors and deceased donors can help save or drastically improve the life of someone waiting for a transplant. Not only is it important to speak with your family about the option of being a living donor, it’s fundamental that your family know your final wishes, as should anything happen to you, your next-of-kin have the final say on organ donation. Joanna said: “It’s extremely important that people talk about it and say what they want to do.”

FarahCarol explained: “Until it happens to you, you don’t realise the impact organ donation can have. We have had first-hand experience and so we understand the importance of having a conversation with your family. It’s just like saying what you’re having for breakfast today – a normal conversation.”

Joanna went onto say: “Following my family’s experience, we want to continue raising awareness of live transplants, so that more consider putting themselves forward and more people are saved. It is daunting when you are in a position where your baby is only a few months old and the transplant list determines whether she is going to survive.”

Joanna added: “There is a special bond between Farah and her Grandma, it really is special. My Mum saved Farah’s life and I’m forever grateful for that.’