Health & Lifestyle

Brave mother donates part of her liver to save son’s life after he was diagnosed with a rare disease at just two years old

A brave mother has revealed how she donated a quarter of her liver to save her son’s life.

Catherine Baker, 42, from Sevenoaks, Kent, was heartbroken when her toddler son George was diagnosed with a rare condition that causes an excessive growth of white blood cells resulting in lesions.

George, now seven, 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) – which had spread to his bones, liver and spleen.

After being given the all-clear in 2021 following a year of chemotherapy, George’s condition returned. 

George Baker, now seven, was just a toddler when he was diagnosed with a rare condition that causes an excessive growth of white blood cells resulting in lesions

George Baker, now seven, was just a toddler when he was diagnosed with a rare condition that causes an excessive growth of white blood cells resulting in lesions

His mother Catherine (pictured together), 42, discovered she was a transplant match and in a 'no-brainer' decision underwent surgery to donate part of her liver to save her son

George (pictured after chemotherapy) underwent several blood tests before being transferred to the specialist paediatric liver unit at King’s College Hospital in London

George (pictured after chemotherapy) underwent several blood tests before being transferred to the specialist paediatric liver unit at King's College Hospital in London

George (pictured after chemotherapy) underwent several blood tests before being transferred to the specialist paediatric liver unit at King’s College Hospital in London

Doctors told his parents that his liver had been seriously damaged and he might not survive. 

It was then that his mother discovered she was a transplant match and in a ‘no-brainer’ decision underwent surgery to have part of her liver removed to save her son.   

When George was a toddler, Catherine noticed the eczema on his scalp, which had been there since he was born, was getting worse and he was taken to see a doctor. 

‘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. 

‘He was no longer his usual happy self,’ she said.

‘It was utterly terrifying,’ Catherine said. 

‘We were told George’s liver had been destroyed and there was nothing we could do to remedy that.

‘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.’ 

After learning of their son's diagnosis, US-born Catherine, who now lives in Sevenoaks, Kent, and her husband Sam were told that George had LCH in his bones, liver, and spleen and would therefore need to begin one year of chemotherapy at the Royal Marsden Hospital, London

After learning of their son’s diagnosis, US-born Catherine, who now lives in Sevenoaks, Kent, and her husband Sam were told that George had LCH in his bones, liver, and spleen and would therefore need to begin one year of chemotherapy at the Royal Marsden Hospital, London

Initially, George responded well to treatment and was given the all-clear on May 21, 2020. However just six days later, Catherine (pictured together) noticed a piece of dry skin on her son's scalp and realised that the disease had returned

Initially, George responded well to treatment and was given the all-clear on May 21, 2020. However just six days later, Catherine (pictured together) noticed a piece of dry skin on her son’s scalp and realised that the disease had returned

The Baker family at the British Transplant Games - mother Catherine, father Sam, with son George and daughters Beatrice and Alice

The Baker family at the British Transplant Games – mother Catherine, father Sam, with son George and daughters Beatrice and Alice

What is Langerhans cell histiocytosis (LCH)?

Langerhans cell histiocytosis (LCH) is a rare disease which affects around one in 200,000 children. 

LCH, which affects one in every 200,000 children, typically presents itself as a skin rash but can damage tissue or cause lesions to form in one or more places in the body.

There is a longstanding debate over whether LCH is a type of cancer or not, as it can often resolve itself.

Most children are cured and the disease has a 90 per cent survival rate, however in severe cases where multiple parts of the body are affected, chemotherapy can be required.

More common in boys, LCH is a condition where a type of white blood cells called histiocytes grow excessively and gather in various parts of the body.

This overgrowth can occur in bones, skin, mouth, lymph nodes, lungs, bone marrow, the liver and spleen, central nervous system, eyes, and the pituitary gland and cause different symptoms depending on its placement.

LCH, which can also affect adults, is described as either single-system, where only one part of the body is affected, and multi-system, where two or more parts of the body are affected. 

What are the symptoms of LCH?

Symptoms of LCH can include: 

  • Bone pain, swelling or lumps
  • Skin rash/flaking of the scalp or creases of the body/scalp ulcers or bumps
  • Swollen gyms/mouth sores
  • Swollen lymph nodes
  • Early or late puberty 
  • Swollen tummy
  • Breathing difficulties 
  • Vision problems
  • Loss of balance/trouble speaking or seeing/memory problems
  • Jaundice (yellowing of the skin and whites of the eyes) 

How is LCH diagnosed? 

 LCH can be diagnosed through a variety of tests, including blood tests, urinalysis, biopsies, gene testing, bone scans, X-rays, CT scans, MRI, ultrasounds and endoscopies.  

How is LCH treated?

How LCH is treated depends on where it occurs and whether it is single-system or multi-system. It can also grow back after treatment.

Treatments for LCH include:

  • Chemotherapy
  • Surgery
  • Radiation therapy
  • Photodynamic therapy
  • Immunotherapy
  • Targeted therapy
  • Other drug therapy
  • Stem cell transplant
  • Observation

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Initially, George responded well to treatment and was given the all-clear on May 21, 2020.

However just six days later, Catherine noticed a piece of dry skin on her son’s scalp and realised that the disease had returned.

The mother-of-three, who also has two daughters called Beatrice and Alice, said doctors explained that George would require up to five further rounds of more aggressive chemotherapy before anything else could be done – but his liver had been so badly damaged by the disease that it was unlikely to withstand the needed further treatment.

‘Doctors said there were no other options available for him and that he might not survive’ she said. ‘It was almost too much for me as a mother to comprehend.

‘We were effectively handed a death sentence for our child.’

Determined to find a way to save George, Catherine ended up speaking 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 across the Atlantic to see him.

‘He immediately took George off the chemotherapy and put him on an inhibitor – a daily medication which stops the mutation that causes his LCH,’ Catherine explained.

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 damaged liver was starting to deteriorate.

Over the next 18 months George developed portal hypertension, became severely jaundiced, and had an abnormally swollen abdomen.

In December 2021, doctors determined that he would need a liver transplant.

Catherine and Sam set about investigating donation by a living relative, as they knew time was of the essence and there was a shortage of donor organs suitable for children.

‘I have the same blood type as George and Sam is not a match, we knew I was the only option,’ Catherine said. ‘As a parent, you will do anything you can for your child.

George is pictured with his two sisters Beatrice and Alice after undergoing chemotherapy

George is pictured with his two sisters Beatrice and Alice after undergoing chemotherapy 

George celebrated turning seven years old on October 17 with his parents and two sisters (all pictured), and even blew out the candles on his cake - something he had never been able to do before as he had always been too ill

George celebrated turning seven years old on October 17 with his parents and two sisters (all pictured), and even blew out the candles on his cake – something he had never been able to do before as he had always been too ill

‘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”.’

Catherine and Sam arranged to meet with the transplant team at King’s College Hospital and their decision was quickly made. ‘I knew we were in the best possible hands – it became a total no-brainer,’ Catherine said.

One quarter of Catherine’s liver was removed and given to George during his 13-hour transplant surgery in April 2022 – which saw his own damaged and diseased liver completely taken out.

His father Sam said you could actually ‘see the jaundice leaving his body’.

George spent less than 24 hours in intensive care following the surgery and within a week of the transplant he was walking up and down the stairs. 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,’ Catherine said.

‘Twelve weeks post-transplant he competed in his school’s Sports Day, and he hasn’t really stopped moving since.’

The part of his mother’s 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.

Meanwhile, Catherine’s liver had completely regenerated within 12 weeks of the transplant.

George celebrated turning seven years old on October 17 with his parents and two sisters, and even blew 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 said.

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.


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