Mum says it’s vital those from ethnic minority backgrounds consider organ donation.
Karen Bahia’s four-year-old son Harvey had a kidney transplant in May, following an agonising two and a half year wait for a suitable donor.
Karen, 35, was told at her 20 week scan that Harvey’s kidneys were an abnormal size and that he was suffering from posterior urethral valves [PUV], a urinary tract obstruction which only affects boys.
“I was advised to terminate the pregnancy and told he wouldn’t have a [good] quality of life,” she says. “But a termination just wasn’t a consideration for me.”
A diagnosis at two-days old
Much to Karen’s joy, Harvey was born in January 2019 weighing a healthy 8lbs. But two days later, doctors confirmed his kidneys weren’t working properly.
“At the time I wasn’t educated about kidney disease,” says Karen, an occupational therapist from Coventry. “I didn’t realise he wouldn’t be able to urinate. I thought he’d maybe have an operation and medication and then life would be easier, but that obviously wasn’t the case.”
The first few months of Harvey’s life were blighted by frequent trips to hospital as he battled one urinary infection after another.
Then, in September, things took a more serious turn.
“He got a severe chest infection and ended up in intensive care,” says Karen. “He spent the next three months in hospital.”
Soon after he was discharged, Harvey began peritoneal dialysis at the home he and Karen share with her parents. Although it was successful initially, he unfortunately contracted sepsis. This was treated successfully but it was decided he should have haemodialysis three times a week at Birmingham Children’s Hospital. The change in treatment marked a huge turning point for Harvey.
“He really thrived on it and began to develop better physically,” says Karen. “Even his speech came on, while the dialysis appointments themselves gave us a sense of routine.
“Harvey loved the familiarity of seeing the same nurses each time we went in, and the other children and their parents became like family. We supported each other so much.”
A longer wait for a transplant
Although Harvey was on the waiting list for a new kidney, Karen was told from the outset that it might take longer than usual to find a donor.
“They said it was likely we’d have to wait longer because of our ethnicity,” says Karen. “That was a wake up call. For reasons I don’t fully understand, Asian people don't tend to donate. But there is no religious belief that says you cannot be an organ donor, so we need to be having more conversations to encourage people to join the register.”
Karen herself was ruled out as a donor, as were her mother and sister Mandy.
So the family breathed a collective sigh of relief when, after extensive tests, her sister Pam, 38, was found to be a perfect match.
Harvey’s transplant eventually went ahead on May 17 and although he spent a week in intensive care due to fluid retention following his surgery, the operation was a success and he was discharged three weeks later.
Although Harvey has just started at primary school, struggling with kidney disease since birth means he hasn’t developed at the same pace as his peers.
“He crawls, but he can’t yet walk, so has to use a wheelchair,” says Karen. “Because he spent so much of his first year in a hospital bed, his development has been delayed. He also still has to be tube-fed. He’ll have the odd nibble of something, but not enough for him to stop using a tube. Things will improve, but it’ll take time.”
A successful transplant operation
One thing Harvey doesn’t lack is energy.
“He’s always been full of beans – which is unusual for children with kidney disease – but since his transplant he’s been ten times worse,” laughs Karen. “From 6.30am he’s fully awake and it’s go, go, go. Despite everything, he’s the happiest little boy you’ll ever meet.”
Pam has also recovered well and been hailed a hero, not just by her family, but also the local Sikh community.
“My sister gets praised by everybody at the Gurdwara [the Sikh temple],” says Karen. “She’s just gone back to work full time and although she gets a bit tired, she’s doing really well.”
As well as feeling indebted to Pam, Karen says patient stories shared by Kidney Research UK have also provided a valuable lifeline.
“Reading other parents’ stories has been a huge help as they've made me feel less alone,” she says. “I follow Kidney Research UK on Instagram and through the comments section you come in contact with people who are going through what you’re going through. That’s a comfort.
“I hope that by sharing my story, I can now support others and raise awareness of the importance of organ donation. This transplant has not only changed Harvey’s life, it’s changed my life and my mum and dad’s life, too.”
Find out more
If you've been inspired by Harvey's story, find out more about organ donation and confirm your decision on the NHS Organ Donor Register - it only takes 2 minutes but could save up to 9 lives.
We know that Harvey's health has taken a dip in the last few days and wish him well. Karen gave permission to share Harvey's story in the hope it raises awareness of living with a chronic condition like kidney disease.
Read about people living with kidney disease
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