In May 2012, eight-year-old Luis Goncalves was admitted to hospital after being diagnosed with kidney failure. Over the next few months he underwent no fewer than 10 operations, many of them emergencies. In March 2013, he received a kidney from his dad – This is his story.
“Luis had showed none of the normal symptoms of kidney disease, such as lethargy, vomiting or lack of appetite,” says his father Ed. “On the contrary, he was a bundle of energy, was doing well in soccer club, and loved cooking.” However, when eight year old Luis suddenly started complaining of stomach pains, tests showed the urea and Creatinine levels in his blood to be almost six times normal levels – classic indicators of kidney failure. His potassium levels were so high he was at imminent risk of cardiac arrest. Ultrasounds and further tests confirmed his kidneys were shutting down.
He would need a transplant. But he would also need to start dialysis immediately. Surgeons implanted a long tube into his abdomen which would enable him to be connected to a peritoneal dialysis machine. “He had to have peritoneal dialysis six times a week for ten hours a day,” recalls Ed. “Peritoneal dialysis comes with the advantage of having the machine at home, so my wife Siobhan and I were trained how to do it.”
At the same time, Luis’ parents told doctors that Ed would go forward as his prospective kidney donor. “We were both prepared to do it,” explains Ed. “However we thought it made more sense if I took time off work to go through with it, whilst Siobhan would help Luis recover.”
A few weeks later, though, disaster struck. Luis awoke in the early hours of the morning in agony and with a raging fever. He was rushed to Great Ormond Street Hospital. He had picked up pseudomonas, a hospital bug with a high mortality rate, and had now developed peritonitis. For the next few days, Luis was connected permanently to a dialysis machine as well as an IV drip, both of which were pumping antibiotics – a last resort – into him.
Although he gradually recovered, the catheter became infected and Luis needed surgery to remove it with a ‘permacath’ tube to be inserted instead. This would be implanted into his chest and go directly into his heart, and he would now have to do hemodialysis at the hospital three days a week.
“When Luis was on hemodialysis, it was as if he was leading a twilight existence,” says Ed. “He had tubes protruding from his body and he wasn’t himself any more. He wasn’t allowed to do even the simplest things and we couldn’t stray far from the hospital. The hospital became his life, if you can call it that.”
The hemodialysis also caused serious medical complications. A number of catheters became infected, requiring several operations to remove them and to insert new ones. Luis spent most of Christmas in hospital and was even recalled to hospital on his birthday. The repeated operations caused blood clots to form on both sides of his heart. Luis has had surgery to repair the blood vessels – one now has a metal tube inserted in it – however surgeons failed to unblock the other, which means he will not be able to have hemodialysis in future.
Meanwhile, although Ed had managed to pass the exacting physical tests to ensure he had healthy kidneys and was fit for surgery, new complications were emerging with the transplant. “The doctors found that Luis was carrying unexplained antibodies in his blood. At one point, it looked very unlikely that Luis would be able to have a transplant,” says Ed. “That was a very dark period.” After consulting with specialist immunologists from King’s Hospital, Great Ormond Street’s doctors decided to go ahead but warned Luis’ parents that it was classified as a “high risk” transplant.
There was more drama to come, though. At 10.30pm the night before the transplant, the operation was suddenly called off when blood tests showed Luis had suddenly developed a potentially serious liver problem. Four weeks later, on March 19th, it finally went ahead.
“I stayed with Luis all night the night before,” remembers Ed. “We watched Scooby Doo DVDs until quite late then cuddled up together until he fell asleep. Just before 6am, Siobhan arrived. I kissed Luis goodbye, hugged Siobhan, and got into the waiting car that took me across town to Guy’s Hospital, where my kidney would be removed. I went into the operating theatre at about 8.30am.”
At around 12.30, Ed’s surgeons called their counterparts at Great Ormond Street Hospital to say that his kidney was out and would soon be ready to be transported. Luis and Siobhan then walked down together to the operating theatre, hand in hand. Siobhan read Arthur Ransome’s “Swallowdale” to Luis as they went. By 1.30pm, Luis’ operation to insert his father’s kidney was underway.
For Siobhan, a long afternoon of waiting and pacing lay ahead. Guy’s Hospital called her from the recovery room where Ed lay to say that he was OK and that everything had gone well. And then at just after 6pm, doctors called Siobhan into the recovery room. Luis was about to come out of theatre.
When he did finally emerge, his bed was surrounded by around 10 doctors and nurses, each of them tending to a different tube or monitor. There was barely space for Siobhan to reach over and give Luis an encouraging squeeze of the hand as he began to regain consciousness. Once all the lines and machines had been connected, he was taken straight up to the isolation unit.
“I was wide awake and back on the ward by the time Luis’ operation had finished, so was anxiously waiting to hear how it had gone. When I heard that he was awake and that the new kidney was working, I was just ecstatic!” says Ed.
Over the next 48 hours, Luis’ Creatinine levels tumbled – showing that the new kidney had not only taken but was working perfectly. Ed, too, was recovering well from his operation and was discharged early.
“When they said I could go and that they would take me to Great Ormond Street to see Luis, I was like an excitable puppy! All I wanted was to see my son and give him a big hug.” Siobhan met Ed at the entrance at Great Ormond Street, from where he walked to his son’s room. “It was actually quite difficult to bend over, and he was struggling to reach up too, but somehow we managed to have a cuddle. It was probably the best moment in my life,” recalls Ed.
Although it had been classified as a ‘high risk’ transplant, there have been few complications since Luis’ transplant, and life has gradually been returning to normal.
“He was at his friend’s house the other day, and they were just trampolining and laughing for hours on end. I haven’t heard him laugh like that for a long time. The biggest change in him is just how cheerful he is. He wakes up with a smile on his face, and his sense of humour has returned with a vengeance. He jokes that I can now be in two places at once! Luis and I have always been close, but this has probably brought us even closer together.”
“Obviously this isn’t the end of the story. Kidney failure is incurable. He will have to have further transplants in future. There will doubtless be complications around the corner, but right now he’s happy and full of beans. He’s constantly dragging me out to go swimming and cycling with him and to play football.
“The worst thing when you’ve got a kid who is sick is that feeling of helplessness – that you can’t do anything to make things better. I feel incredibly lucky. I was given a chance to do something. I was able to make my son better again. As a parent, you always want to do whatever you can to help your kids. Giving my son a kidney is the most important thing I’ll ever do in my life.”
Since leaving hospital, Luis and Ed have launched an appeal for more people to sign up as registered organ donors. “The fact is that there are a lot of children – and adults – who aren’t as lucky as Luis and me. We were a good match; some kids don’t have a compatible family member, or their new kidney has been rejected so they’ve had to go onto the waiting list.” Luis has been writing to MPs asking them to sign up to the NHS’ register of donors in order to set a good example to others.
“The response has been extraordinary. Luis had letters of support from the Prime Minister David Cameron, Government Ministers, the Shadow Health Secretary to name but a few!”
For more information, visit www.luislist.co.uk