Annie Millar will never forget the phone call that changed her life - and saved the life of her baby daughter.
"It was Sunday morning, I was laying in the bed with her, having some cuddles. I got a call from a 'no caller ID', so I knew it was the hospital," she told Essential Baby.?
"I answered and one of the nurses in the gastric?team said 'Hey Annie just letting you know we've actually found a liver for?Rayne'. I've never jumped out of bed so fast, I was so nervous I was shaking. I was frantic."
Before that call 12-month-old Rayne-Marie?was very ill, battling an ongoing, serious liver infection that saw her put on the transplant list.?
After the transplant, she spent weeks recovering - including battling sepsis - before she was able to enjoy a full quality of life.?
Now Ms Millar?is sharing their story to remind others about the life-changing potential of organ donation.?
"For me and for our family, [organ donation] changed everything.?It's a very sensitive subject, but my whole family are now listed as an organ donors," she said.
"Before all this happened we never gave it much thought, it's not until you go through something like this. It opened our eyes. If anything happened to us, we'd want to donate, because at the end of the day that's saving someone's life."
"You?realise how important donating really is. I'm so grateful to the family who made the tough decision in their time of grief for my little girl."
Picture: Rayne-Marie was very ill leading up to her liver transplant
Rayne-Marie was just two weeks old when the first time mum felt something was amiss. The jaundice she'd been diagnosed with at birth was not getting better and she wasn't gaining weight. After taking her to the local hospital, her?bilirubin levels were tested and her tiny baby was transported to the Queensland Children's hospital.?
It was an agonising wait as further tests were conducted to try and detect what was causing her elevated levels. At just 10 weeks old she underwent a surgical incision to take a closer look at her liver. Doctors found that not only were her bile ducts not draining properly, she had malrotation, a condition which meant her bowel, intestines and appendix were in the wrong place.
Removing her appendix, rearranging her organs, and performing a procedure to help the bile drain fixed some issues. But the little girl then began to develop constant infections which saw her spend much of the next year in and out of hospital.??
"Fom there?we had issues with infections, constantly. We were?in hospital for four months straight battling infection after infection after infection. She would be on antibiotics for five days, off for two and then on the third day have a high temperature again and have to go back on them. This went on for a month at one point. She'd be out of hospital for one week then back in for two. They were just constant," Annie said.
The hospital's gastric team then investigated further, finding that she had a infection known as?pseudomonas, which antibiotics were unable to treat.?
Picture: Rayne-Marie spent the better part of a year in and out of hospital battling an ongoing infection
"At this point, I was scared, it was a different experience from what I imagined motherhood to be like. I had great support but it was very challenging," Annie said.
"They sat down with me and told me 'Look, the only way to fix this is a transplant'. At this point the Kaisai (procedure to drain the bile duct) was failing was well, so?bile was not leaving liver as it should. We needed to start looking at transplant as an option."
Getting a call in February last year to tell her that Rayne-Marie was on the list was bittersweet for Annie.?
"When I found out she was listed I went through so many emotions. I was so scared. I was happy but so scared at the same time because she was on the road to getting better and?she'd have a better quality of life, but it's not a simple surgery either, it's a very big procedure and comes with risks as well," she recounted.??
Three months later she got the call that Rayne-Marie would get a new liver that afternoon.
Picture: Today Rayne-Marie is a healthy, happy two-year-old
After a nine hour surgery, Annie and Rayne's dad were given the life-changing news that the surgery was successful.
"I tell you, it was the longest nine hours of my life. It was such an overwhelming relief that everything went fine, that she was doing well and we could go see her."?
Although she had a post-surgery abdominal bleed and sepsis, once they cleared she recovered well and Annie says she's now like any other toddler.?
"Ever since then we've never had a problem with her liver. She has a much better quality of life, a lot more social as well, before transplant more time in hospital than out, in that way that part so much better, socialise better with kids now at home."
In Australia, 463 people donated their organs, saving 1,270 people. COVID-19 has seen a decline in the number of people who donors, which was down 16 per cent. However 58 per cent of families approached to donate said yes.?