Transplant chance for ill boy Josh
A TODDLER who was diagnosed with a rare disease when he was born has received a life-saving liver transplant.
Little Josh Nesbit was only four weeks old when he was diagnosed with a biliary atresia, a disease that affects the liver in newborn infants.
Mum, Karen, 33, from Royal Wootton Bassett, said: “You just have to get on with it. You never think these things might happen to you and when it does it’s hard.
“Now he is so much better and more like himself. It’s a bit like having a different child.”
The condition had him in and out of hospital more times than most people will in a lifetime and anxiously wait for a new liver before his condition worsened.
To give Josh more time before he needed the operation, surgeons carried out a Kasai procedure, which surgically bypasses the blocked liver ducts to prevent damage.
However, this was not without its own complications, including an infection of the bile duct and portal hypertension, which meant his spleen was five centimetres bigger than an average adult’s.
He also suffered from pulsing veins and internal bleeds in his throat as a result of heightened blood pressure.
On the morning of July 1, the family received the call to tell them that a liver was available, and they had 30 minutes to prepare themselves before the ambulance arrived to take them to King’s College Hospital, South London.
Karen said: “They called at about 9.45am to tell us they had a liver. It was a bit like being in a dream. I was a bit shocked.
“Josh had the operation later that day at 9.30pm, and spent the next two and a half weeks recovering and that’s quite short,” said Karen.
“Usually it’s about three to four weeks they have to stay in hospital but he was only in there for two weeks so he did well.”
While they waited for the seven-hour operation to end, Karen and husband Trevor, 36, who works for telecomms company AFL, had a room to wait in.
“He didn’t come out of theatre until 4.30 am the next day,” said Karen. “They gave us a room to stay in but we didn’t sleep. We just waited.
“They kept us updated all the time but even then we didn’t know if he was going to come back or not. Time seems to go so slowly.”
Although the transplant of part of an adult’s liver was a success, the family now have concerns about his body rejected the organ, and soon after they came home from King’s College Hospital, Josh had an infection which saw him admitted again.
“He had some fluid around his liver,” said Karen. “He was in Great Western Hospital and then back in King’s College Hospital.
“We worry constantly about what’s going to happen. When he is well you could hardly tell there’s anything wrong, but when he is poorly he is really poorly because he’s on immunosuppresant drugs to stop rejection.
“You just have to deal with it, especially if you have other children. You have to make everything as normal as possible.”
While Trevor and Karen took Josh to hospital, their other sons, James, eight, and five-year-old Jack, stayed with grandparents.
“Their grandparents have been a great support. The boys know something is going on but they still want to see their mum and dad,” said Karen.
While Josh recovered from the operation, Karen and Trevor stayed at Ronald McDonald House in Camberwell, where Josh’s brothers could come and stay.
Trevor said: “The house was comfortable and supportive, which was ideal.”
On Father’s Day this year, Trevor took part in a 54-mile bike ride to raise money for the charity, which offers free accommodation to families of sick children.
- You can still give to Trevor at http://www.justgiving.com/Trevor-Nesbit-LondontoBrighton
Comments are closed on this article.