Heartbreaking decision was a lifeline for six-month-old Erin

Watching and waiting while a loved one goes through a life-saving organ transplant is an agonising time.

But for first-time parents Kirstin and Jamie McIlvaney it was particularly difficult as their tiny daughter needed a new liver when she was just six months old.

Erin’s new organ came at just the right time, from a teenager whose liver went on to save not only little Erin but an adult too.

Five years on, mum Kirstin said it gives her huge comfort knowing Erin received an organ from someone who wanted to donate it. As it stands, individuals have to sign up – or opt-in – to donate their organs when they die.

But the debate continues about adopting a “soft opt-out” approach in Scotland, which would assume adults have given consent unless they consciously remove themselves from the list.

Earlier this month, MSPs narrowly rejected an opt-out Bill but did not rule out further consideration of the scheme in the future.

It comes two months after Wales took the “revolutionary” step of moving to deemed consent in the hope of making more organs available to save lives.

Kirstin, who’s originally from Cumbernauld but now lives in Biggar, said: “For me, anything that improves the levels of organ donation is a good thing.

“It will be interesting to see what happens in Wales.

“It personally makes me feel really comfortable knowing that the person who donated Erin’s liver wanted to donate it.

“From my experience, no one is ever against it, so I think we just have to spark that debate in the community about it.

“Very few people will say no but I don’t think we want to be in a position where we are pushing people into it if they are not happy with it.”

The McIlvaney’s story began in the summer of 2010 when their seemingly healthy five-week-old baby appeared jaundiced.

Kirstin (34) said: “A blood test revealed there was something wrong with Erin’s liver and she was diagnosed with biliary atresia.

“It meant that her bile duct was disappearing and the bile was poisoning her liver.

“The condition is very rare and Erin had to be transferred to Leeds General Infirmary for specialised surgery.”

Despite the procedure, Erin’s condition deteriorated and it soon became clear she would need a liver transplant.

Kirstin said: “Her liver was riddled with cysts that were being continually infected so it was damaged beyond repair.

“She was sent back to Leeds for a transplant assessment but she was very unwell.

“When you’re waiting for a kidney, you can have dialysis.

“But once it has reached a certain stage and your liver is failing, there is really nothing they can do once.”

The family effectively moved to Leeds as they waited for a suitable liver.

Kirstin said: “She was, by this point, too ill to be cared for at home, and needed round the clock IV medication.We kept busy covering care.

“It’s only when you look back that you don’t know how you did it.

“Thank goodness we didn’t have to wait long as I don’t think she would have been fit enough.

“We dare not think about what could have happened.”

After just an eight-day wait, Erin received a split liver transplant in February 2011.

Following her nine-hour transplant operation, she recovered “remarkably quickly”.

Despite a bumpy first year, Erin is now healthy and happy and living life to the full.

She’s a happy P1 pupil at Biggar Primary School, has a little brother Owen and has won medals at the British Transplant Games.

“She already has Liverpool 2016 in her sights,” Kirstin said.

It’s clear organ donation saves and transforms lives but when it comes to sensitive matters of the heart, it looks like there can be no easy answer.

Kirstin added: “The current system is not effective, mainly because of the over-ruling system.

“If relatives don’t know their loved ones want to donate, they feel uncomfortable, and, in tragic circumstances, they may just say no.

“From doctors I have spoken to, relatives simply don’t know their loved ones wishes.

“But I have spoken to a lot of donor families and it does give them so much comfort that their loved ones’ organs have gone on to save a life.”