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Baby Connor Desperate For Transplant After Rare Disease Takes 11 Weeks To Find

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Wednesday, November 09, 2016

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BIRMINGHAM, UK - Doctors took 11 weeks to diagnose little Connor McCue with a rare disease that causes his liver to disintegrate. In that time, the organ suffered irreparable damage that means he now needs an urgent transplant. His parents Paul McCue and Jessica McDonagh are hoping that one of them will prove to be a donor match. Jessica, of Meir Heath in Staffordshire, said: “I’m frustrated and really angry that it was not picked up sooner as we would not be looking at a transplant now.

“I never thought I would be facing anything like this in a million years. “The reaction of the staff when I took him to A&E told me something was really wrong. He was more orange than yellow. “He was in surgery for five hours and it was absolutely horrific. “The surgeon said he would not normally perform this operation on a baby older than six weeks and expect it to work. “The earlier the condition is diagnosed the better. It’s now inevitable Connor will have to have a transplant, but we are hoping he can hold off as long as possible. “We’re desperately hoping we can be donors for him. If not, he will have to wait for someone else to die so he can live. It’s a horrible situation, but you will do anything for your own child.” Jessica, a 27-year-old medical administrator, knew something was wrong soon after he was born at Royal Stoke Hospital on June 23.

Connor was yellow and was struggling to feed or put on weight Jessica said: "One midwife noticed that he was jaundiced and they put him on a BiliBed for 24 hours. "When we came home three days later he was still suffering but the midwife said the best thing to do is to keep him in the sun and feed him lots, which we did. "For a while I did not think anything was really wrong, but my mum kept raising concerns.

"We got a referral from the GP but he said it was not urgent, and I was given an appointment for five weeks' time. "But by that point I was not prepared to wait as I was really concerned about him." Connor was given a hospital appointment for October, but Jessica was not satisfied with that and took Connor to Royal Stoke Hospital's A&E department on September 7 when he was 11-weeks-old. He was diagnosed with a rare strain of biliary atresia, which causes the small ducts in the liver to become blocked or disintegrate.

Within 48 hours, Connor was transferred to Birmingham Children's Hospital for an emergency operation. Jessica said: "He was transferred in a high dependency ambulance and taken very quickly into surgery. "It was a horrendous five hours. It was such a roller coaster of emotions. "I cannot thank the surgeon enough. Without him Connor would have died." The Kasai operation that doctors performed on Connor is supposed to bypass the damaged ducts to stop liver damage. But his late diagnosis meant his liver was already too damaged and has left him needing a transplant within a year. His parents believe the rarity of the disease contributed to Connor's late diagnosis.

Only 44 cases are identified in the UK every year. Jessica said: "If the condition were more common or had more awareness then it would not have come to this point. "All it takes is a blood test to find out something is wrong." Jessica and Paul, a 44-year-old digger driver, are now fundraising to increase awareness of biliary atresia and to support Birmingham Children's Hospital and the Liver Foundation.

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