“You just don’t think about the risk to yourself, you just think that you could save your child’s life.”
These are the words of Sophie Barr who decided to have major surgery to remove half of her own liver to give it her baby daughter Patricia.
“Patricia was a happy and healthy baby, until she was around three months old when we noticed her stomach was becoming swollen,” says Sophie, 25, from Sheffield.
“My husband, Andrew, and I are first-time parents and we weren’t sure if this was normal so I mentioned it to the health visitor during a regular monthly check-up. From there everything happened quite quickly. We were referred to Sheffield Children’s Hospital for tests which revealed that Patricia had a tumour in half of her liver.
“I don’t think we really took it in it happened so fast. It was also really hard to comprehend that she was so ill as she seemed well in herself.”
Patricia was admitted to hospital at the beginning of January this year and began undergoing chemotherapy to shrink the tumour=, but then her condition started to deteriorate rapidly.
“She became so poorly that we decided to have our daughter christened at the hospital. Just hours later, Patricia was rushed to the intensive care unit as all the pressure of the tumour was on her lungs. She couldn’t breathe and had started to turn blue in my arms She was put on a ventilator, which became her lifeline for a week.”
It was then that Sophie and Andrew were told they could stay at Magnolia House, which is run by The Sick Children’s Trust and allows parents to be close by to their poorly child.
“Before this Andrew and I had been sleeping in the hospital ward with Patricia, but this isn’t an option when your child is on the intensive care unit. It was such a relief for us both that we wouldn’t have to be more than a few minutes away from Patricia while she was so poorly.
“Neither of us realised how badly we had been sleeping until we moved into Magnolia House. In the hospital you’re surrounded by the noises of machines and other families. It doesn’t really stop. Sleeping in the comfortable beds at Magnolia House helped us to keep our strength and energy up to support Patricia throughout her treatment.”
Patricia stayed in Sheffield Children’s Hospital for five weeks, but the family were told that she needed a livery transplant.
“A transplant at such a young age is just something you don’t want to think about, but you have to trust the medical team.”
Patricia was put on an emergency donor list at Leeds Children’s Hospital at the beginning of March to try and find a liver donor as soon as possible. This meant that they would also have to stay in Leeds as it’s too far to travel from their home in Sheffield every day.
The couple moved into a hotel to be close to their baby, but it quite quickly started to eat through their finances. It was then they were told about another Sick Children’s Trust property Eckersley House.
As the days turned into weeks, it became apparent that there was no suitable liver for Patricia.
Sophie had already asked it she could donate part of her liver and was going through the necessary tests and also counselling.
Their hopes were raised when they were told that a suitable liver had been found. Patricia was taken into theatre but the operation was suddenly cancelled because the liver turned out to be damaged. The same day though Sophie was told that she was a match for Patricia and the living donation could go ahead. There are around 1000 living donor operations in the UK each year, but less than three per cent of those are a liver transplant, the vast major are kidney transplants.
“I was warned about the risks as it is major surgery, but you just don’t think about that, you just think that if it can help your child then you will do anything.
But it meant Sophie had to leave Patricia with Andrew at Leeds Children’s Hospital while she had her operation at St James Hospital
“I was put under anaesthetic at 6am and then part of my liver was transferred over to Leeds Children’s Hospital to be given to Patricia. Her operation began a couple of hours after mine.
“Afterwards, all I wanted was to be reunited with her and Andrew. It must have been terrible for him as he had us both in surgery at the same time.
“When I was well enough to leave hospital, I joined Andrew at Eckersley House and continued my recovery there, which meant we could be back together as a family sooner. “
After a few weeks and a slow but steady recovery from their operations, Patricia and Sophie were finally able to roll the marble down Leeds Children’s Hospital liver and renal transplant celebration wall, which marks that you’ve successfully made it through the treatment.
“It was an amazing feeling.”
Patricia had her last round of chemotherapy on the April 26 and a few months later we had the fantastic news that she no longer had any cancerous cells and will need no further treatment.”
On Sunday the family had a big celebration and blessing for Patricia as most people had missed her hurried hospital Christening. They then had a quiet family celebration on Tuesday to mark her first birthday.
“She’s a little chatterbox,” says Sophie. “She has physiotherapy every week to help her catch up as she pent such a long time lying down in hospital.
“But she is totally different child since she had the transplant. I would do it again.”