Organ Donation Week: Olivia’s story

This Organ Donation Week (4-10 September) meet Olivia, 11, who became the first child at Great Ormond Street Hospital (GOSH) to receive an organ donation from both her mum and dad.

Realising something was wrong

When Olivia was 22 months old, a scan showed tumours growing on both her kidneys due to a rare cancer, called Wilms tumour, and she had to have them both removed.

Mum Natalie says: “When Livi was 22 months old, I felt a lump in her stomach. I immediately had a terrible feeling something was really wrong. I took her to her local doctors who sent us to our local hospital.

“They discovered she had tumours on both kidneys and sent us to GOSH the next day. From that moment, our life changed.”

Arriving at GOSH

Between 25 to 36 renal transplants are performed at GOSH every year.

“Livi underwent a seven-hour operation to remove one and a half of her kidneys. They hoped to save part of one kidney so she wouldn’t have to go on dialysis but unfortunately the remaining part didn’t work and she had to go back into surgery the next day. During those operations, I would try to sit patiently on the ward but the waiting was agonising.

“I felt Livi was very young to be on dialysis but on the ward you see babies. When you’re going up to GOSH three times a week for dialysis, you build a good relationship with the nurses and the doctors. The whole renal team are incredible, they all go above and beyond, they’re amazing.

“Livi’s all-time number one favourite nurse is Amanda. Whenever Livi was distressed, Amanda is amazingly calm. She’s wonderful.”

Olivia’s first transplant – ‘Sid’

Seven years ago, Paul, Olivia’s dad, donated his kidney, which Olivia calls Sid.

“As soon as Paul and I could get tested, we did. Paul was a stronger match and it was an immediate decision that he would go first.

“The transformation after the first transplant was incredible. While Livi was on dialysis, we bought her a micro scooter and she used to go the end of the drive way and be puffed out and say she couldn’t do any more. She had to be tube fed constantly. She was pale and very thin.

“When Livi had Paul’s kidney, oh my goodness, her skin colour changed. Within a week she was saying ‘I’m hungry’. We came home and I cooked a family meal and we were all staring at her eating, it was just incredible.”

Transplant patient seated in a garden

Transplant number 2 – ‘Elsa’

Unfortunately, Olivia’s first transplant began to fail. Natalie then donated her kidney, which Olivia calls Elsa after her favourite character in Disney’s Frozen.

“For a good few years it was going really well. Unfortunately, in 2014, Livi had a few urinary infections and that caused a little rejection of the kidney. Before it got to the point of going back on dialysis, we spoke to the hospital and decided to donate my kidney to make sure she stayed well.

“We felt blessed that we could both donate and she didn’t have to go on the transplant list.”

“GOSH is like a second family”

“Through all the operations and the transplants, Paul and I could stay in the charity funded parent accommodation. It was really important to us to be close to Livi.

“We have always been honest with Livi. I’ve found it’s the best way with her, so she can trust me. The Play Specialists at GOSH helped Livi understand what was happening by writing a cartoon story about it. They turned it into a book and now use it with the other children.

“We still go to GOSH every six to eight weeks and Livi’s very happy to go. Even though she’s had traumatic times, the people there are like our second family. She loves going to the play room to do biscuit decorating or painting or to help put up the Christmas decorations. The play specialists, always go the extra mile for the patients.”

Join the Organ Donor Register

“I would hope everybody signs up to the organ donation list. If you saw the transformation in a child, you’d sign up. I know children who have been on dialysis for six years, and it’s painful to see. We feel lucky. We don’t know what the future might bring but we just look at Livi singing and dancing around the house, and concentrate on that.

“I think Livi knows what we have done for her. She’s had lots of operations and been to hell and back but you wouldn’t know it. She’s a special girl.”

This Organ Donation Week, add your name to the NHS Organ Donor Register and one day you may be able to save lives.