New hope for Lara is the best first birthday gift

Her family thought they'd never get to celebrate Lara Barr's first birthday after she was born with a life threatening liver disease. But now the big day is here today, mum Alisha talks about the trauma following her daughter's birth and how her family can finally look forward to a happy future with their little Braveheart, writes Liz Rowley .

IT WAS a day they feared they'd never see, but for Alisha Walley and long-term partner Andrew Barr, seeing daughter Lara reach her first birthday is a dream come true.

Born with a rare and life threatening liver disease known as biliary atresia, Lara underwent critical surgery during her first few weeks. The operation was a success but not a cure, and while Lara will receive a liver transplant at some point, the family can look to a bright future together.

"As far as we were concerned Lara's pregnancy was normal and we were expecting a healthy baby," says 31-year-old Alisha, a customer service adviser, who lives at Harcourt Avenue, Meir, with electrician Andrew, aged 30, and their five-year-old daughter Erin.

"We had no trouble with Erin, in fact Erin was a breeze coming two weeks early, but Lara was a little stunner – she was nine days late and I had to have an emergency caesarean."

Like so many newborns she was tinged with jaundice and Alisha and Matthew had no initial cause for concern. But at three weeks old, a mother's instinct told Alisha something wasn't right.

She says: "We were told the jaundice could last up to two weeks, but at this time Lara's eyes were still yellow. I told the midwife, but conditions like this are so rare that even she was unsure. She rang the Cheethams ward at the North Staffs just to be on the safe side and Andrew and I took her up the same day, not really thinking things were as bad as they would turn out to be."

Blood tests revealed a cyst in Lara's bile ducts – the ducts responsible for draining bile from the liver – and the couple were told immediately she would have to be transferred to a specialist children's hospital.

"When you hear news like this your heart goes into your mouth," says Alisha, who is expecting her third child in September.

"It took them a while to examine her because her veins were so thin, but you always know something is wrong when two doctors come to tell you the results," she adds.

"They told us that her red blood cells weren't breaking down as they should, which suggests a number of things, one of which is a problem with the liver."

More tests at both Cheethams at the University Hospital of North Staffordshire and St James's University Hospital in Leeds, diagnosed Lara with a life threatening liver disease. A gruelling five to seven hour operation was now imminent.

"It was a very difficult time," says Alisha. "All this information was flooding to us but my first reaction was confusion. You just think that your baby is dying and you feel so helpless because it's completely out of your hands.

"She had been through so many tests that she looked like a little pincushion, so when they told us she was going to have to have such a big operation, I wondered how it would be possible with someone so small and fragile."

Waiting patiently while surgeons proceeded at St James's, Alisha and Andrew couldn't shake the image of life without their little Braveheart.

"We had been through so much in such a short space of time, and every time doctors came to talk to us Lara always had the worse case scenario," says Alisha.

"Signing the consent forms and turning away from her as she went for the operation was the hardest thing we've ever done, but somehow we managed to hold it together. It was only when we got outside that we both broke down."

Unable to settle for the lengthy period Lara was in theatre, Alisha and Andrew took a walk into Leeds city centre where they comforted themselves by buying presents for their two precious daughters.

Alisha says: "There was no way we could have spent all those hours pacing around the hospital. We went into the Disney Store and bought a teddy for Lara and Erin, who was staying with my parents, but when we got back we still had to wait for news Lara was OK."

News eventually came that Lara's operation had been a success.

"When I knew everything had gone well I just felt calm because I thought that all she had to do now was recover. When I learned that the operation wasn't a cure, I felt like I'd been hit by a bomb."

In fact the only cure for Lara would be a liver transplant, which experts feel she won't require now until she is in her 20s.

Alisha says: "Apart from her scar no one would suspect she had been through so much.

"She is forever smiling her cheeky smile, and while I do worry if she catches a cold or gets an upset stomach, I try to treat her the same as Erin. She will be on medication for the rest of her life but it's just amazing to watch her now."