'I donated a quarter of my liver to help save my son's life'
A mum has donated a quarter of her liver to save the life of her son who is living with a rare type of cancer.
George Baker was just two years old when his mum Catherine, noticed that the eczema on his scalp – which had been there since he was born - was gradually getting worse.
"At the same time, he started to become a lot more tired, he was very pale, and he would wake in the night with severe tummy pain," US-born Catherine, 42, who now lives in Sevenoaks, Kent with her husband Sam, explains.
"He was no longer his usual happy self."
George was admitted to Tunbridge Wells Hospital, where he underwent several blood tests before being transferred to the specialist paediatric liver unit at King’s College Hospital in London.
There, the toddler was diagnosed with Langerhans Cell Histiocytosis (LCH) - a cancer which affects one in every 200,000 children.
The disease typically presents itself as a skin rash but can damage tissue or cause lesions to form in one or more places in the body.
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The family were told that George had LCH in his bones, liver, and spleen, and would need to begin one year of chemotherapy at the Royal Marsden Hospital.
"It was utterly terrifying," Catherine says. "We were told George’s liver had been destroyed and there was nothing we could do to remedy that.
"But because it was cancer and needed to be treated with chemotherapy, there was very little time to process any of it.
"It was like our lives had been blown up, but there was no time to reflect on it. It wasn’t as though you could just crawl into bed and not get up – life kept going.
"It was heartbreaking."
Reflecting on George first going into the Royal Marsden, Catherine, who also has daughters, Beatrice and Alice, says: "We were surrounded by children who had lost their hair and had feeding tubes. It was almost an out-of-body experience.
"But as the weeks went on, my perspective changed. When George lost his hair, I still saw my child. I didn’t see his illness."
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Initially, George responded well to treatment and was given the all-clear on 21 May 2020.
However, just six days later, Catherine noticed a piece of dry skin on her son’s scalp – and realised that the cancer had returned.
"We found ourselves in an appalling situation," she says. "Doctors explained that George would require up to five further rounds of more aggressive chemotherapy before anything else could be done.
"But his liver, already damaged by the cancer, was unlikely to withstand further treatment.
"Doctors said there were no other options available for him and that he might not survive. It was almost too much for me as a mother to comprehend.
"We were effectively handed a death sentence for our child. But in my heart I knew there was another way."
Determined to find that other way, Catherine spoke to a family friend who told her about an alternative treatment method for LCH by Dr Ashish Kumar, an oncologist at Cincinnati Children’s Hospital in Ohio in the US.
Five days after contacting Dr Kumar, the Baker family flew over to see him.
"He took George off the chemotherapy and put him on an inhibitor - a daily medication which stops the mutation that causes his LCH," Catherine explains.
"He continues to take the medication today and it is unclear how long he will need it, but it has none of the side effects of chemotherapy."
Within two days of starting the medication, George’s skin rash started to disappear.
The family returned to the UK two weeks later, but, during a routine blood test, discovered that George’s already-damaged liver was starting to deteriorate.
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Over the next 18 months George developed portal hypertension, became severely jaundiced, and had an abnormally swollen abdomen.
In December 2021, doctors determined he would need a liver transplant.
"Sam and I both knew that time was of the essence and also that there is a shortage of donor organs suitable for children," Catherine says.
"We were therefore keen to investigate living related donation, and, as I have the same blood type as George and Sam is not a match, we knew I was the only option.
"As a parent, you will do anything you can for your child.
"But there was a moment or two when I thought, ‘I would give my life for George in a heartbeat, but we do have two other children’."
Having met with the transplant team at King’s College Hospital, the family's decision was quickly made. "I knew we were in the best possible hands – it became a total no-brainer," Catherine says.
One quarter of Catherine’s liver was removed and given to George during his 13-hour transplant surgery last April, which saw his own damaged and diseased liver completely taken out.
"We have both been incredibly fortunate in our recoveries," Catherine says.
"George spent less than 24 hours in intensive care. Within one week of the transplant, he was walking up and down the stairs, and after four weeks, he was running up and down the ward kicking a football.
"He was like a completely different child, with more energy than he’d had in years.
"Twelve weeks post-transplant he competed in his school’s Sports Day, and he hasn’t really stopped moving since!"
Livers are able to regrow and Catherine's had completely regenerated within 12 weeks of the transplant.
The part of her liver given to George started to function normally as soon as the transplant was complete, and should continue to grow in size as he does.
George recently celebrated turning seven happily blowing out the candles on his cake – something he had never been able to do before, as he had always been too ill.
"There’s no doubt that after the rollercoaster few years we had had, it was a very special birthday," Catherine adds.
After George’s transplant, the Baker family were helped by the Children’s Liver Disease Foundation (CLDF), a charity which researches child liver diseases and provides support to affected children and families.
Living organ donation: the facts
Organ donation is when you decide to give an organ to save or transform the life of another person. You can donate some organs while you are alive, and this is called living organ donation.
Across the UK, more than 1,000 people each year donate a kidney or part of their liver while they are still alive to a relative, friend or someone they do not know.
The most commonly donated organ by a living person is a kidney. A healthy person can lead a normal life with only one functioning kidney and therefore they are able to donate the other to help someone in need of a kidney transplant.
Part of a liver can also be transplanted from a living donor to help someone in need of a liver transplant.
Living kidney transplantation is usually very successful with 96% of donated kidneys working well a year after the operation. This compares with a success rate of 93% for kidneys from deceased donors.
For more information about organ donation in the UK visit organdonation.nhs.uk
Additional reporting SWNS.
