Royston mum’s life turned upside down when doctors tell her she needs a liver transplant
PUBLISHED: 14:58 06 February 2018 | UPDATED: 09:39 07 February 2018
Iliffe Media Ltd
Mum Sarah: ‘I was terminally ill... then the call came’
Sarah Barker’s life was turned upside down when in 2014 doctors told her that she would need a liver transplant.
For the first time, the mum-of-two realised she was dying.
“I had a bit of a crisis,” Sarah explained. “It felt like my world was coming crashing down. I’d just had my second child and we’d only ever wanted two children, so I thought I had everything. But suddenly something massive had happened.”
Sarah, 35, was born with a childhood disease of the liver called biliary atresia. She had surgery at just a few weeks old and up until four years ago, she lived a “normal life”.
“You don’t get on the transplant list until you’re dying,” she explained. “That was quite a lot to take on.”
Sarah, who lives in Royston and works in Cambridge, added: “I had my first child in 2012 and I was fine. But then when I went to have second child, the problems started.”
Sarah was treated with antibiotics for what doctors thought was a virus but later turned out to be cholangitis – an infection of the bile ducts in the liver.
Throughout her pregnancy, she was in and out of hospital due to the recurrence of the cholangitis.
“I’d be out for a while and then I’d fall ill and be back in again,” she said. “I thought one day it would just go away so I wasn’t worried, but maybe I was being naïve.”
Three months after her son was born, Sarah started to suffer with back pain which was later discovered to be a fracture. Her liver problem had affected her body density and, for the next six months, she couldn’t really move very much.
“I couldn’t lift my son or stand to change his nappy,” she said. “I was in a bit of a mess really.”
On a routine visit to the hospital for antibiotics, doctors told Sarah that she needed to start thinking about a transplant.
“I had my son in my arms. My husband was there but ready to leave to go home and the doctor just walked in and said that,” she said.
Sarah went on the transplant list in July 2015, the month she would have been returning to work from maternity. She spent most of 2015 in and out of hospital.
“It felt like I was never out of there,” she said. “There was one time where I was only out for 24 hours and then I was back in again because the infection came back so quickly.
“You are told that you’re terminally ill, but you have the hope that a donor is going to come along and you’ve always got that hope to hold on to.”
But waiting for a transplant comes with its own problems. Sarah’s mother lives in North Wales with her sister, who has Down’s syndrome, and travelling became an issue as well as needing to be close by in case a liver became available.
“You’re sitting on the edge of your chair, waiting. Five months passed, six months passed and then the reality hits you. It might never come.”
And then the phone call that would change everything came, at 11.10pm on a Saturday night in February last year.
“I went into the kitchen to get a glass of water for bed and I was stood in the kitchen, leaning against a unit, staring into space and my mobile phone started ringing in my pocket.
“I pulled my phone out of my pocket, and it was an unknown number. I thought: ‘Who is calling me at 11.10pm?’ Transplant wasn’t in my mind at all.
“I know it sounds stupid but after 19 months of waiting, you forget. I guess part of your brain thinks it’s not going to come.
“I couldn’t gather my thoughts properly. It was a surprise because even though I’d been waiting for so long, a large part of me accepted that the call might never come. But here it was, I got the call. Saying goodbye to the boys was really hard.”
But equally hard for Sarah was the realisation that somewhere another family was heartbroken.
“It’s overwhelming that a family can have so much grief and in that time of devastation, take a step away from it and consider giving someone of the person that they’ve just lost to save another person’s life.
“I can never thank that family enough.
“Somebody has given me the opportunity to see my boys grow up. They’ve given my mum back a daughter and my husband, a wife. For me, it’s very important that I give back.”
Sarah continues to raise awareness of organ donation.
“It’s amazing what a difference it can make. It’s only now I can start to think about what I lost. In that period when I couldn’t really do anything, that became my life. I almost forget how good life can be.”