Seeing her six year old son sitting in his hospital bed, happily playing with his Lego just three days after a life-changing operation filled Kate Lewis with overwhelming 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. 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.
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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 grueling 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.
‘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. 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 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 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.
‘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 and 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.
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 who was two miles away in the children’s unit. He then had a four-hour operation to insert the kidney.
‘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 theater 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.’
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.