Little Aurora Oliver spent much of her first year in hospital and will need a liver transplant in the coming weeks
Aurora Oliver, celebrating her birthday, left, and right when she was in hospital as a newborn(Image: Rebecca McNicholas)
This week, little Aurora Oliver enjoyed her first birthday after spending much of the past year in hospital. Just weeks after her birth on April 15 last year, the little girl was diagnosed with biliary atresia, a rare and life-threatening liver disease.
Since then the Redcar tot has undergone surgery, spent time in intensive care and has been back and forth to Leeds Children’s Hospital. On December 30 last year, her mum and dad were told she would need a liver transplant.
After celebrating Aurora’s first birthday on Wednesday, mum Rebecca McNicholas reached out to other parents to warn them of the signs of the condition, as well as urging people to donate blood. Aurora’s life was saved several times through blood transfusion as she recovered from surgery.
“It’s about raising awareness of the signs and the condition itself,” Rebecca, 37, said. “I hadn’t heard of it and I suppose the concept of liver disease or liver problems – you would usually associate it with alcoholics or older people or people with liver cancer.
“I was a mum for the second time so I knew something was wrong. First-time mums might not realise or be fobbed off.”
Aurora was diagnosed with biliary atresia just weeks after birth(Image: Rebecca McNicholas)
The little girl needed surgery called the Kasai procedure when she was just a few weeks old(Image: Rebecca McNicholas)
Biliary atresia occurs in babies, usually presenting a few weeks after birth. The bile ducts inside or outside the liver are blocked or absent, which stops bile flowing into the bowel. If untreated it usually leads to liver failure.
There were no immediate concerns when Aurora was born and Rebecca and partner Chris Oliver brought her home to Redcar. “She was a bit on the small side but everything was fine, nothing to worry about,” said Rebecca.
“Obviously because she was my second baby I started to realise something was wrong. By about seven days she was up to about 7lb 7oz and everyone was like, ‘oh that’s fantastic’, but she was overeating and projectile vomiting.
“Her stomach was really distended and I couldn’t settle her at all. I was falling asleep sat up in bed holding her and she was crying for about 16 to 17 hours a day.
“I mentioned it to the midwife and they said, oh no two babies are the same. But I just couldn’t settle her.
“The health visitor was pretty much the same, saying no two babies are the same. It’s just because you’ve got two now and it’s harder.”
The little tot weighed 5lb 11oz when she was born and there were no immediate causes for concern(Image: Rebecca McNicholas)
In hospital where she spent several days in intensive care(Image: Rebecca McNicholas)
Rebecca said Aurora also showed some signs of jaundice which went on for longer than two weeks – when further investigations should be carried out. “When she was about three and half weeks old my sister came round and said, ‘I don’t want to upset you but she’s looking worse and worse each day,'” said Rebecca.
“Her eyes were very grey, there was not much life in her and she was just crying. Again something I didn’t realise at the time – a baby’s wee should always be colourless but hers was darker like an adults.
“Her poos got lighter and lighter in colour until they were almost white. We took her to Redcar walk-in on May 17 and they said we had to go straight to James Cook.”
Blood tests were carried out at the Middlesbrough hospital and Aurora was taken in an ambulance to Leeds Children’s Hospital, which specialises in the rare condition. Three days later, the baby underwent an operation called the Kasai procedure.
This removes damaged bile ducts outside the liver and replaces them with a segment of the small intestine to allow bile drainage. In some cases, the Kasai procedure can slow or prevent liver failure.
“They don’t do the procedure once a baby gets to eight weeks old,” said Rebecca. “So when I was actually on the ward, there were mothers who had been fobbed off and their babies were now nine, ten, 11 weeks old and it was too late for them to have it.”
After several weeks in hospital, Aurora was able to return home at the end of July. Rebecca said at first it appeared the surgery had been the answer to their prayers.
“In the winter she then started getting infections,” she said. “She spent October to January in hospital, because every time she got an infection it was going into her liver.
“The day before New Year’s Eve we were told she needed a liver transplant.” A date has not been set but Rebecca expects it to be in the coming weeks.
With her big sister Willow, who is coming up two(Image: Rebecca McNicholas)
With mum Rebecca, dad Chris and sister Willow(Image: Rebecca McNicholas)
“They want her to be 10kg before they do a liver transplant,” she said. “At the minute we’re in limbo waiting and just trying to fatten her up as much as possible.
“We’re on a rotation of treatment and going back on Tuesday. If she needs a liver there and then she gets bumped up the transplant list.
“If they say she’s going to be okay for another month six week, eight weeks, they will keep pushing her on with the treatment.” Rebecca and Chris will be able to give part of their own livers, but Rebecca said she was told, depending on the urgency, Aurora may need to receive a donated liver from someone who was died.
“We’re going to do both at the same time,” she said. “I will do anything I can to save her.”
(Image: Rebecca McNicholas)
(Image: Rebecca McNicholas)
In the meantime, Rebecca and Chris, 36, who works as a chef at Tomahawk on Saltburn, are enjoying every moment with their gorgeous and happy little girl, and her big sister Willow who turns two later this month. This Sunday the family will head along to Redcar Beacon which will be lit up in yellow and purple for World Liver Day.
Biliary atresia affects approximately one in 17,000 babies in the UK. The UK National Screening Committee has launched a public consultation on whether all newborns should be screened for the condition.
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