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Liverpool Echo
Liverpool Echo
National
Remy Greasley

Mum's warning after GP visit discovers baby's rare condition

A mum issued a warning to parents after a visit to her GP revealed her baby boy had a rare potentially life-threatening condition.

Samantha Carty, 26, from Birkenhead first noticed newborn Lucas was 'unsettled' and had a yellowy complexion soon after he was born. Being a first-time mum, she was unsure whether to be worried, but decided to take Lucas to her GP, who immediately flagged Lucas' condition as something out of the ordinary.

Lucas underwent blood tests at Arrowe Park hospital in the Wirral, but it wasn't until the family was sent to a specialist unit at Leeds hospital that it was confirmed Lucas had a rare liver disease known as Biliary Atresia. The condition, which is congenital and affects one in every 20,000 babies, causes a blockage in the ducts that carry bile from the liver to the gallbladder and occurs when those ducts don't develop properly.

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Surgery is required to remove the blockage, and luckily Samantha and her partner Josh Morris, 28, caught it in time for doctors to operate on Lucas. However, there is still chance of infection, and Lucas may need a liver transplant later in life.

Samantha told the ECHO: "I thought I should take him to the GP and ask them if it's just me being overly-cautious and a new mum and not understanding what's going on.

"The GP raised some concern to us that he was slightly jaundiced, and she has a paediatric background so she referred us to the hospital to do checks. I was in hospital for a good 11 hours in total. They had performed all the needed observations, like of his heart rate, and they were all fine. That was when they did blood tests on him.

"At that point I wasn't entirely sure what they were checking for but I think they must have had some indication, then the doctor came in and sat me and my partner down and basically just said that he had this rare liver disease known as Biliary Atresia."

The couple were then sent to Leeds hospital for confirmation of Lucas' condition and where he underwent surgery. Biliary Atresia is a condition that must be caught early to give the sufferer a fighting chance, but luckily Lucas was in surgery only two days after the specialist doctor had seconded the initial diagnosis.

She said: "The thing with this disease is that it's critical that they have the procedure as soon as possible. I think anything after around three months can be quite life-threatening.

"Although he's had the surgery it doesn't mean everything's going to be hunky dory and that he's going to be okay, because the surgery only kind of delays damage to the liver. So there is still possibility that he may have to have a liver transplant still

"I don't think the pair of us could process what [the doctors] were telling us. Obviously we were in shock- we'd had some indication that there was definitely something wrong but we didn't have a complete idea.

"I had to get one of the doctors to give our parents a call because the pair of us couldn't process what was going on. I just remember crying for hours and hours on end."

Baby Lucas, who isn't yet 1, in his team kit (Liverpool ECHO)

Samantha posted about her ordeal on Facebook, in the hopes it would help other parents whose babies may be experiencing similar symptoms. She said: "Obviously we've never had children before and thought that maybe we were overreacting but looking back now if we hadn't done what we did then Lucas probably wouldn't even be here now.

"If there's an instinct and you think something is wrong go to the GP, go to the hospital, but obviously there were signs that we know you can look out for, such as jaundice that carries on for 10 to 14 days, very pale, while stools, dark urine. [Lucas] was also just very unsettled."

Lucas is now doing better, though Samantha says that a common side effect of the surgery is reinfection, and unfortunately he has been readmitted to hospital multiple times since the operation. The last was less than a fortnight ago.

She said: "He was obviously unwell the last times we took him in but this time round I was genuinely terrified because he wasn't acting his normal self.

"But fingers-crossed. The hospital are now keeping an even closer eye on him and he's having repeated observations done every couple of weeks to keep an eye on things. We'll be going back down to Leeds soon to check him over to see if they think anything's changed."

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