Ollie's transplantation story
This is the Accepted Manuscript version of a Published Work that appeared in final form in the Journal of Renal Nursing, copyright © MA Healthcare, after technical editing by the publisher. To access the final edited and published work see http://bit.ly/1pmRbyD, Originally published September 2013
Meet 3-year-old Oliver Dow and his mother and carer, Sam. Their experience reveals how diagnosis, treatment and management of renal disease and transplantation are not straightforward tasks—a tough challenge for everyone involved.
Oliver Dow, best known as Ollie, is nearly 4 years old. He plays with his little brother, James, loves climbing in the park and is getting ready to start primary school. He is just like any other little boy, but his journey makes him special. Ollie has suffered from end-stage renal disease. His primary carer is his mum, Sam, and his dad Nick gave him his kidney.
This is the story of Ollie’s renal failure, transplantation and the many complications scattered along his path.
Ollie’s first birthday—where it began
Sam and Nick first realised something was wrong in mid-February 2009. On a Thursday, 11-month-old Ollie began having a temperature. This was initially diagnosed by the out-of-hours doctor as a virus but by the Sunday evening, he was having fits and shakes in his legs. Sam and Nick took him back to the out-of-hours doctor and he was immediately admitted to the children’s ward at Basingstoke and North Hampshire Hospital. There, Ollie had scans and was given antibiotics for what appeared to be a bacterial infection, most likely meningitis. Although at first Sam and Nick thought Ollie was beginning to improve, he began having trouble breathing and became severely ill.
Ollie had pneumococcal meningitis. It was caused by Streptococcus pneumoniae, which is the second biggest cause of bacterial meningitis in the UK and Ireland. Ollie then developed haemolytic-uraemic syndrome (HUS), as a result of bacteria lodging in his digestive tract and creating toxins, which entered his bloodstream and began destroying the red blood cells (Meningitis Research Foundation, 2011).
The seriousness of Ollie’s condition required him to be transferred to the paediatric intensive care unit (PICU). As there was no PICU at Basingstoke, however, he was rushed to Southampton General Hospital in an ambulance—his condition looked bleak.
‘They were saying they weren’t sure if he would survive the trip,’ recalls Sam, who had been planning Ollie’s first birthday before he was taken into hospital. ‘I remember thinking I would be planning a funeral and not a birthday party.’
Ollie’s birthday came and went in Southampton General Hospital while everyone focused on keeping him alive and getting him well. Only about 8 kg at the time, Ollie had several tubes running through his body. A nasogastric (NG) tube looked after his nutritional needs and he received his antibiotics, first through an intravenous drip and later, through a peripherally inserted central catheter (PICC) line. However, the HUS, which is the most common cause of sudden acute kidney failure in children (Tidy, 2012), soon caused Ollie’s kidneys to fail. This required yet another transfer, from PICU to the children’s renal ward, where he began receiving renal replacement therapy in the form of peritoneal dialysis. Despite all the complications leading up to Ollie’s renal disease, there were still many more to come.
A string of complications
As Ollie was transferred from unit to unit, Sam and Nick began to feel there was something different about their little boy. Despite the noisy environment of the hospital, Ollie didn’t seem to respond.
‘Oliver was always quite a lively boy,’ says Sam. ‘We started to feel like he couldn’t hear us.’
As a result of Ollie’s meningitis, he lost his hearing. In addition, damage to the left side of his brain left him with minimal movement in his right side.
Gradually, Ollie regained movement and was starting to hold himself up. However, it had been about 2 months since his initial admission and it was beginning to look as though his kidneys weren't going to improve. Around the same time, Ollie developed peritonitis, which is a common complication in patients on peritoneal dialysis. He then had a haemodialysis line inserted as an alternative. With his NG tube still in place for his nutritional needs, Ollie was finally released home, returning three times a week to his local hospital for haemodialysis. Only 2 or 3 weeks after his release, however, Ollie was re-admitted to Southampton General Hospital; this time, for an operation to insert cochlear implants in the hope of restoring his hearing. Although results weren’t immediate, Sam and Nick’s lively boy was coming back to them, little by little.
He continued to be fed via his NG tube until about June. He then had a gastrostomy tube fitted and continued to receive overnight milk feeds through a feeding pump. At this time, Sam and Nick were told that Ollie could be put on the list to receive a deceased donor’s kidney. Ollie underwent a series of examinations and vaccinations so he could be put ‘on call’. However, finding a donor can take time and his 8 kg of body weight would need to increase to at least 10 kg before he could receive an adult kidney. He continued his dialysis in hospital, for about a year, going through about seven operations for new HD lines. ‘It was scary to think that was his lifeline,’ says Sam. ‘You would just think, “what if it comes out? What will he do?”’
Soon after Ollie’s kidneys failed, Sam and Nick decided to find out whether either of them could be Ollie’s living-related donor. Both parents were found to be a match. Although Sam was a better match by about 1 or 2 points, she soon realised she was pregnant with her second child. Not only were Sam and Nick now getting ready for another addition to their family—Nick was preparing to donate a kidney to Ollie.
Ollie’s second birthday—the transplant
Ollie’s kidney transplant was meticulously planned out. By the time transplant day rolled around, newborn son, James, was 9 weeks old and Ollie had just turned 2. Nick and Sam arranged to borrow a flat belonging to a friend in London and left 9-week-old James with his grandmother for 6 weeks so the operation could take place at Guys and St Thomas’ Evelina Children’s Hospital.
‘It felt awful leaving him,’ says Sam about leaving James at such a young age. ‘He was so young but it was something we had to do and he was too young to remember.’
The night before the transplant, Nick unexpectedly found himself with a temperature. After months of detailed preparation, the entire procedure was up in the air. Luckily, though, his temperature came down in time for the operation at 8 am the next morning.
‘It was quite emotional not knowing until the last minute whether or not it would go ahead,’ remembers Sam.
Ollie’s transplant nurse, whom he likes to call ‘Yaya’, says it doesn’t matter how carefully you plan, there will always be surprises with transplants. ‘No amount of preparation can prepare you for the absolute upheaval a transplant causes,’ says ‘Yaya’.
Nick had his operation at Guys and St Thomas’ Hospital and Ollie had his next door at Evelina Children’s Hospital. However, Nick’s temperature the night before the transplant and Ollie’s compromised immune system meant they couldn’t have any contact. Instead, Nick walked over to his son’s room and watched him through window. ‘It was kind of surreal,’ remembers Sam. ‘They were looking at each other through the glass.’
Once the transplant had taken place, Sam recalls the changes she saw in both Ollie and, her husband, Nick.
‘Oliver looked like a well child after the transplant, he even tried to swipe a biscuit from me when he was nil by mouth—and Nick looked really awful,’ she says. ‘Sometimes you forget what a big operation it was for Nick, it took him 2-3 weeks to feel better and 3 months before he could return to work. Oliver was better in himself almost immediately as he had regained his colour and was showing an interest in food, which was really exciting for us.’
However, nurse ‘Yaya’ says Nick’s recovery time could be considered a short one as live donors can take about a year to feel well. The donation took its toll on Nick but he was just relieved Ollie had the kidney he needed and proud that his son had come through, yet, another ordeal.
During the first year following the transplant, Ollie was hit with so many urinary and hearing infections, he was in the hospital every few weeks and was admitted almost every month, says Sam. At one point, Ollie was hospitalised for a month with cytomegalovirus (CMV) disease (colitis), which despite usually being compared to a mild flu, is a severe illness in patients who have just received a transplant (UK National Kidney Federation, 2011) or who have a compromised immune system. Ollie was finally able to eat 6 months to a year after the transplant but nurse ‘Yaya’ says he attended hospital for review a minimum of 90 times that year.
Ollie’s fourth birthday—looking forward
It has now been almost 2 years since the transplant and Ollie is getting ready for his 4th birthday at Peppa Pig World. While Ollie still finds himself unwell more frequently than most children his age, he is constantly pushing his boundaries and amazing those around him.
‘When he arrived, he was a terrified little boy,’ says Yaya. ‘He’s a complete cheeky little chappy now.’
In addition to Yaya, who is a clinical nurse specialist, Ollie has two nephrologists, a play specialist and a pharmacist, among many others in the wider team at Evelina. He also has a team of specialists who support him locally at Basingtoke Hospital and still others who provide home visits.
Ollie visits Evelina Children’s Hospital every 4 weeks and as his condition continues to improve, this should go down to every 5 or 6 weeks. During his last visit, he wore a bright red wooly sweater and on it, a label with multi-coloured smiley faces and the printed words, ‘I was a very good boy for my blood test today’—a big achievement considering bloods used to be the most difficult part of Ollie’s visits.
Ollie still gets infections and the occasional mystery illness, requiring hospitalisation. Overall, though, he is a world away from the sick baby he was a few years ago, says Yaya.
‘His immune system is suppressed so he’ll catch more than normal,’ says Sam. ‘Sometimes it seems we have more than our fair share but it’s amazing how quickly you get used to everything. The hearing thing upset me so much in the beginning but its been nothing compared to everything else!’
In time, Ollie should be able to have his gastrostomy tube removed. Meanwhile, he is working hard to try and hit a daily water consumption of 1.5 litres, which for a boy of his size, is not an easy task. Although he doesn’t yet understand his condition, Ollie is beginning to grasp the importance of his fluids, saying things like, ‘If I drink, my not have to do tubey!’.
In addition to his fluids, Ollie needs multiple medicines several times a day to prevent rejection of his transplanted kidney and keep him well, says ‘Yaya’.
‘The transplant isn’t a cure. It’s a treatment,’ she says. ‘It’s a real long-term management—there is no magic fix.’
The family continues to take one day at a time and make adjustments when necessary. They have just moved closer to a school that has a hearing special unit for Ollie and mainstream schooling for his brother.
‘You do feel a bit vulnerable that anything could happen to him at anytime,’ says Sam. ‘But he’s such a happy boy when he’s well— we’re just so lucky.’