Mother urges organ donation discussion after young son’s liver transplant

A mother whose “miracle” three-year-old son is one of the youngest babies to have received a liver transplant has urged other people to discuss organ donation with their loved ones.

Arlene McNab first suspected her son Zac was not well a few days after he was born three weeks premature in June 2022, when she noticed a bruise on his leg.

She and her husband Brian took him to the Royal Hospital for Children in Glasgow where he was placed in the Intensive Care Unit (ICU) and at six days old was transferred to Leeds Children’s Hospital.

In Leeds, he underwent tests which found that he had Haemophagocytic lymphohistiocytosis (HLH), a rare immune disorder which had been triggered by an enterovirus and had led to organ failure.

The family, who live in Clydebank, West Dunbartonshire, were told Zac would need a liver transplant and he underwent the operation on July 25 that year, becoming one of the youngest babies to have such a transplant.

Mrs McNab said: “He was put on the transplant list at five weeks old, and he was put on there on Friday night, and we got a call on the Sunday afternoon to say that there was a potential liver for him. So he was very, very lucky. We got that call really quickly.

“They told us before we left Glasgow that the chances of Zac getting a transplant were really small, to the point where they kind of told us that we’d be best getting family to come and see him before we left and and that was scary.

“I think we just hoped that he would. And I know how lucky he is, because there’s so many kids and adults, I guess, that don’t survive waiting.”

She added: “He really is a miracle.”

For his transplant, Zac received part of a liver from another child.

He spent several months in intensive care after the operation, initially in Leeds until September when he was transferred to the ICU at the children’s hospital in Glasgow.

He was then moved onto another ward and was allowed home in November 2022.

Since then he has made good progress, while still taking medication each day including immunosuppressants.

Now aged three, Zac is an active little boy who enjoys playing football, bouncing on the trampoline in his garden, attending nursery and spending time with his older brother Jake, aged six.

As organ donation week begins, Mrs McNab is urging people to discuss the issue with their loved ones.

She has been in contact with the mother of the two-year-old girl whose liver Zac received and said the McNab family are so grateful to her.

Mrs McNab said: “I think I feel like people don’t really speak about it, and I understand why. Obviously now experiencing the other side of organ donation as well, it’s amazing.

“Zac didn’t have long left, he was very, very lucky. And I think if you’re able to give the family, a family, any family – or several families in that little girl’s case – that hope and extra time with their loved one it’s just amazing.”

She is glad to be in touch with the girl’s mother and said: “I think unless you experience it, it’s quite hard to explain, because you are so happy that you’ve got your child and that someone has been able to do that for you, but you still have a really sad, overwhelming feeling for them too.

“She’s such a beautiful little girl, and it’s so sad that family’s had to go through that.”

Organ and Tissue Donation Week runs from September 22 to 28.

The Scottish Government’s “Don’t leave your loved ones in doubt” campaign is urging people across Scotland to register their donation decision.

People in Scotland can choose to be a donor, or to opt out.

If those aged 16 and over choose to do nothing, it may be assumed that they agree to become a donor if they die in circumstances where donation is possible, unless they are part of an excluded group or if donation would be against their beliefs.

More information can be found at www.organdonation.scot and more information about Organ Donation Week and laws elsewhere in the UK can be found at https://www.organdonation.nhs.uk/get-involved/news/get-involved-in-this-years-organ-donation-week/ .