Newport mum backs children’s liver disease charity

A NEWPORT mother has endorsed a national campaign calling for greater awareness of the signs of liver disease in babies, after her daughter had to undergo a liver transplant at just 10 months old.

When Alicia Bennett’s daughter Luna was born two years ago, doctors soon discovered that her liver was malfunctioning.

Although Ms. Bennett, 32, who has Graves’ disease, a condition that causes an overactive thyroid, and Luna were allowed to go home after 11 days, when the baby was seven weeks old, a health visitor expressed concern about the color of their poo and arranged for them to go to Grange University Hospital in Cwmbran.

Three days later they were taken to Birmingham Children’s Hospital, which has a specialized liver unit, where it was confirmed that Luna had biliary atresia, a rare liver disease, and would require specialized surgery, known as the Kasai procedure.

“The Kasai, which is meant to allow the flow of bile from the liver, can only be done until the child is eight weeks old,” said Ms. Bennett, who also has a five-year-old son, Hendrix. “Luna was seven weeks old so time was of the essence and she had surgery just before her first Christmas.”

South Wales Argus:

Although Mrs. Bennett was told it would be six months before they knew if the procedure had been a success, Luna’s health deteriorated and doctors decided she would need a liver transplant.

“We were lucky,” he said. “She found a suitable liver within weeks and her transplant took place in September 2021 when she was ten and a half months old.

“I will be eternally grateful to his donor family.”

It was when she was first at Birmingham Children’s Hospital that Ms. Bennett learned about the Children’s Liver Disease Foundation (CLDF).

“It was great knowing I wasn’t alone in this,” she said.

And now he is backing the charity’s Yellow Alert campaign, which promotes awareness of the signs and symptoms of liver disease in children for GPs and other health workers.

Symptoms of liver disease in children include loss of appetite, stomach or abdominal pain, fatigue, and vomiting or nausea. Because these symptoms can be similar to other problems, doctors may run other tests to check for it.

CLDF chief executive Rebecca Cooper said: “Unfortunately, because liver disease in children is rare, many GPs and health visitors will only see one or two cases in their career, and the crucial symptoms of poo pallor and prolonged jaundice may be missed.

“Our Yellow Alert campaign educates healthcare professionals and new parents on the signs to be aware of and steps to take. Early diagnosis is key when treating childhood liver disease and our goal is for all healthcare professionals health in Wales have the tools to facilitate that.”

Mrs Bennett added: “Luna is such a resilient little girl and I am so proud to be her mother.

South Wales Argus:

Mama Alicia Bennett, with children Hendrix and Luna

“As difficult as the last two years have been, things could have been even worse if we hadn’t received the diagnosis when we did.

“That is why I am so supportive of CLDF’s campaign to inform every GP in the country about the signs of liver disease in babies.

“Jaundice is very common and most new parents will have no idea that the color of a baby’s poop is so important. I’d hate to think a case could be missed.

“Time is of the essence when treating these babies, and parents really need information and emotional support. Knowledge is power and it changes lives and Luna is living proof of that.”

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