Life Stories

Kate's Gift to Her Son, James

My name is Kate Lewis.  I am an advocate for Live Life Give Life, and am a passionate supporter of organ donation.  In July 2016 I donated my left kidney to my son, James, aged 6.

James spent 18 months on haemo-dialysis at Southampton Children’s Hospital.  This kept him alive as he had no kidney function.  During this time James managed to attend school part-time.  He spent five hours in the haemo-dialysis unit three days a week, week in week out, including Christmas, without pause.  Many people spend years on dialysis; it's not an easy way to live.  James felt constantly sick and could barely eat.  His sense of taste was unpleasant and this restricted what he could eat – predominantly bland food like cheese sandwiches and chicken nuggets.  He had an overnight feed via a gastrostomy tube in his tummy to give him enough calories to keep him going.  Despite this, and feeling tired, James remained cheerful and made the best of his life.

Early on in this chapter of his life, my husband and I were asked if we were informed about the option of live donation.  If we had a good cross-match with James’ blood, then we might be able to donate a kidney to him.  Both of us were tested, and my sister too.  After testing it was decided that I would be a good donor, being fit and well and a good match.

The journey to this point was reasonably complex as James has previously had had many medical problems and extensive surgery, but once the decision was made, I cannot tell you the relief that I felt.  Throughout the tests, I had overcome any fears of surgery and really felt that, as James’s mother, it was a very natural thing for me to give my kidney to the child I had birthed.

The night before the transplant my husband, David, myself and James went out for dinner along the South Bank, not far from the Evelina Children’s Hospital.  James and I went for a ride on a carousel and cuddled up together on the horse.  I felt very emotional, but excited too.  David took James back to the Evelina, and I went to my hotel near Waterloo for the night.  Surprisingly, probably because I felt so calm, I managed some sleep.  Early the next morning I took the tube to London Bridge, and met my sister, Clare, at the entrance to Guy’s Hospital.  We went up to the ward and got ready for the big operation.

The transplant was very successful.  My kidney was taken with a doctor by ambulance from Guy’s Hospital to the Evelina.  Later that day I was recovering and heard the happy news that James was out of surgery, doing well and that Sidney the Kidney was producing urine.  Happy days!

Three days later I was told by my surgeon that I was allowed to visit to James.  I burst into tears as I was so relieved and happy that I could see him.  Within a couple of hours I was at James’s bedside; it was wonderful to spend some time with my precious boy. James was feeling so much better already, enjoying the benefits of a fully functioning kidney.

I spent five days in hospital and then recuperated with my family.  It's taken a few months to recover from the operation, but it's all been worth it.  James has been back at school full-time since last September and is now going to clinic for check-ups every three weeks.  I feel fine with one kidney.  My remaining kidney has taken on the workload of both kidneys.  I eat and drink normally, keeping well hydrated, and will have annual check-ups, which is useful in any case.

The wonderful fact is that most of us are born with two kidneys; we have a spare.  So if you are able, why not save someone’s life and donate a kidney?  There are thousands of people awaiting kidney transplants.  Life on dialysis is tough and unpredictable.  The more people who donate or sign up to the organ donor register, the more lives will be saved.  The beauty of live organ donation is that it could make way for another person to potentially receive an organ from a deceased donor on the organ donor register.

My son, James, has already been fortunate enough to have his life saved by organ donation.  At the age of 3 James was diagnosed with restrictive cardiomyopathy, a degenerative and incurable heart condition.  This came as a massive shock to us as James was born a healthy third child in a family with no history of heart conditions.  His only hope would be a heart transplant.

James spent 15 months waiting for a new heart.  After a year at home, in July 2014, his condition worsened and he was admitted to Southampton Children's Hospital, where he was put on IV drugs to support his heart.  In September 2014 he was transferred by air ambulance to the Freeman Hospital, Newcastle, to improve his chances of getting a new heart.  He arrested a few weeks later and was put on to mechanical support whilst he waited.  James's other organs were now suffering from poor perfusion and his kidneys started to fail.  At the eleventh hour James got his life-saving gift of a new heart, just in time.  He had another six weeks in PICU at the Freeman, where doctors fought very hard to overcome many complications, including a stroke and chronic pancreatitis.  James's' strong will to live, his fantastic new heart, and the dogged determination of his medical team, finally won through.

At the end of January 2015, James was transferred back to Southampton Children's Hospital, where he started haemo-dialysis and recovered from his complications.  He learnt to walk again and started school in the summer term of reception, in between dialysis sessions.

This brings us back to the point where I donated my kidney to James.  We are delighted to say that Sidney the Kidney is doing a great job.  Never has anyone been so excited about doing a wee!

Thanks to the work of Live Life Give Life and all its members, and other people around the country sharing the message about organ donation, together with our fantastic NHS, James now has great quality of life.  Organ donation has transformed James's life.