Seeing her six-year-old son sitting in his hospital bed, happily playing with his Lego just three days after a life-changing operation, Kate Lewis was overwhelmed with gratitude.

Her own fragile condition all but forgotten, tears of relief fell down her face as she kissed James and he looked up at her and said with a smile: ‘Thank you, Mummy.’

It was a thank you with enormous significance, for Kate had donated one of her kidneys to James in what was the little boy’s second life-saving organ transplant.

Aged three, James was diagnosed with an incurable heart condition, possibly caused by a virus, and his only hope had been a new heart.

Aged three, James Lewis (right) was diagnosed with an incurable heart condition, possibly caused by a virus, and his only hope had been a new heart

By the time he received it — in November 2014 — James was so ill that, at one point, he suffered a cardiac arrest and had to be resuscitated.

The heart transplant was a success and, within five months, James was back at school part-time, and able to play on the trampoline in his family’s garden in Winchester, Hampshire, with older siblings Amelia, 12, and Charles, ten.

But the 15 months he’d spent on the waiting list had caused irreparable damage to his kidneys, and James had to go onto dialysis (to flush out waste products from his body) — three times a week for a gruelling five hours a time.

Because dialysis isn’t as efficient as a kidney, James was left with increased levels of creatinine, a chemical that made him too nauseous to eat anything but cheese, crackers and chicken nuggets.

He couldn’t even have a proper bath or go swimming because he wasn’t allowed to get the ‘port’ for the dialysis wet.

‘It was awful that, after everything he’d been through, our little boy wasn’t able to make the most of his new heart,’ says Kate, who is married to David, 46, a share trader.

But that wasn’t the only concern.

On average, a dialysis patient lives for around ten years after starting the treatment: a kidney transplant was James’s only chance of a normal life, and long-term survival.

‘The doctors said there was a lower chance of the kidney being rejected if it was donated by a relative with a good blood match,’ says Kate.

The 15 months James (pictured) had spent on the waiting list for a new heart had caused irreparable damage to his kidneys, and he had to go onto dialysis

‘Not only that, but not putting James on the donor list would mean someone else could benefit from a kidney, so David and I agreed to be tested. 

‘David wasn’t a match but, thankfully, I was. I didn’t think twice — James was my baby.’

The family had already been through so much. In April 2013, James was diagnosed with restrictive cardiomyopathy (RCM) — where the lower chambers of the heart are rigid. 

As a result, the heart loses its ability to pump blood, leading to chronic lethargy and, eventually, heart failure.

Good Health first spoke to Kate in June 2014, when James had been on the transplant list for 11 months.

His health continued to deteriorate and he became so weak, he had to be admitted to hospital.

In April 2013, James (pictured) was diagnosed with restrictive cardiomyopathy (RCM) — where the lower chambers of the heart are rigid

James, pictured with his sister Amelia (right), his mother Kate (middle), his brother Charles (top left) and his father Charles (bottom left) 

That September — unable even to get out of bed — he was transferred to the Freeman Hospital in Newcastle, one of only two hospitals in the UK that performs heart transplants on children.

Three weeks later, still waiting for a heart donor, he had the cardiac arrest. 

‘We felt so powerless, and all I could do was pray that James would hang on for long enough,’ says Kate.

James was resuscitated and immediately had two pumps fitted to help his heart — but, by now, the poor blood supply had caused his kidneys to fail.

‘We knew James’s kidney failure could cause problems if he survived but, at this point, our focus was obviously on finding him a new heart,’ says Kate, who gave up her job as a history teacher when her son became ill.

Even after James received his new heart later that month, it was far from plain sailing, as he suffered two strokes caused by blood clots and was unable to speak for weeks.

James, pictured with his mother Kate (left) while they waited for his heart transplant. After the operation, he spent the next five months in hospital

James spent the next five months in hospital. When he was finally discharged in April 2015, doctors warned that he’d need a kidney transplant. 

Once the decision was made that Kate could be the donor, it was a matter of making sure James was well enough for the operation.

And this meant putting on weight — he had to weigh 20 kg (a little over 3 st) to make his lower abdomen large enough to receive Kate’s adult-sized kidney — so had an overnight feed via a tube into his stomach.

Meanwhile, Kate gently prepared her son for the surgery. ‘I said my kidney could help him get his energy back and stop the dialysis.

‘We gave my kidney a name, ‘Sidney’, and I avoided the surgical details so as not to frighten him.’ 

By last summer, he was ready: on July 20, Kate and David settled James into the children’s ward of Guy’s and St Thomas’ Hospital, so he could have a final scan to check his new heart was strong enough for surgery two days later.

While still waiting for a donor, James (pictured) suffered a cardiac arrest and needed life support. James was resuscitated and immediately had two pumps fitted to help his heart

‘The next evening, his doctors let us take him out to a restaurant, although James didn’t feel like eating,’ says Kate.

‘James and I went for a ride on a carousel — it felt like a special moment before the unknown.’

As she was also having surgery, Kate was not able to take her son to theatre. ‘As I kissed James goodbye the night before, I felt overcome with emotion,’ she says. 

‘I wanted to be with him as he went into surgery. But knowing he had been through so many successful procedures before eased my nerves.’

The surgery was not without risks for her. Although a patient with one healthy kidney has the same life expectancy as one with two, Kate ran the risk of bleeding or developing a serious infection.

‘But I was more concerned James could suffer complications, such as his bowel being accidentally cut during surgery and his body flooded with toxins,’ she says.

Although a patient with one healthy kidney has the same life expectancy as one with two, Kate (pictured) ran the risk of bleeding or developing a serious infection

During Kate’s four-hour operation, her left kidney was removed — transplant surgeons prefer to remove the left as it is easier to access and usually has a longer vein coming out of it that makes transplanting it easier.

Her kidney was then washed with a sterile liquid and placed in a sterile plastic bag and then an ice box.

‘Kidneys can survive outside the body for more than 12 hours, but the sooner they are transplanted, the better,’ says Isobel Gordon, Kate’s transplant nurse at Guy’s.

 Within three hours, Kate’s kidney had been rushed in an ambulance to James — two miles away on the children’s unit. He then had a four-hour operation to insert the kidney.

His failed kidneys remained in situ — they cause no harm, and it’s considered more risky to remove them than to leave them in.

The Lewis family gathered in the hospital on Christmas day 2014. James was still waiting for his heart transplant at the time

‘When I came round, I was groggy from pain relief, overwhelmed with relief and desperate to see James,’ says Kate — but she couldn’t because she, too, needed to recover.

James was still in theatre but, shortly afterwards, Kate’s sister — who was with her as she came round — told her James was doing well and the kidney seemed to be working.

Three days later, Kate was allowed to take a short taxi ride to see her son. ‘Walking through the hospital was a struggle, but it was more than worth it,’ she says. 

‘It was only as I saw him that the enormity of the situation finally sunk in. He already had colour in his cheeks.’

Kate was discharged after five days. After two-and-a-half weeks, James was discharged, too.

The dose of anti-rejection drugs he’d been taking since his heart transplant has now been increased. 

James learning to walk again after his surgery in April 2015. When he was finally discharged in April 2015, doctors warned that he’d need a kidney transplant

He will be on these for life and he also has to drink 1.7 litres of liquid — water, milk or juice — a day to keep his new kidney hydrated.

He still has fortnightly tests to check his kidney function.

But since the transplant, James no longer needs dialysis. He has more energy and, last September, he started school full-time. 

He recently learned to ride a bike and has begun swimming lessons. ‘James has been doing brilliantly,’ says Kate. 

‘He is strong and able to do all the things other children his age can.’

Although the average lifespan for a transplanted kidney is around ten years, they have been known to last decades. The average transplanted heart lasts for 15 to 20 years.

After two-and-a-half weeks, James was discharged from the hospital. He has to take anti-rejection drugs to stay alive, and will be on these for life

‘The surgery has given me a new perspective on what James has been through and an even greater respect for organ donation,’ says Kate, who has returned to full health.

The family knows James is one of the lucky ones — 282 patients died waiting for a kidney transplant between 2015 and 2016. 

Kate, 47, who is a representative for the organ donation charity Live Life Give Life, is keen to raise awareness of the chronic shortage of organs.

‘James’s surgeon says he can now expect a long and happy life,’ she says. ‘I am so grateful for his new heart and privileged to play a part in helping him make the most of it.

‘Organ donation has changed his life — twice — and, for that, we will always be grateful.’

TO JOIN the NHS Organ Donor Register, go to: organdonation.nhs.uk or call 0300 123 23 23.