Mum's plea for organ donor after desperate two-year hunt to find kidney for son

26 July 2023 , 11:17

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Harvey was diagnosed with kidney failure shortly after being born

A mum of a little boy who needed a kidney transplant is urging the South Asian community to get on the organ register.

Harvey Bahia, who is of Indian heritage, was diagnosed with kidney failure shortly after he was born despite their being no serious health issues in his family.

After a long two-year journey of hospital appointments, Harvey's aunt generously gave him a much-needed healthy kidney in May.

Mum Karenjit Bahia says the delay in finding a suitable match was longer due to lower donors in the South Asian community.

Since Bahia's sister Pam donated her kidney, Harvey, 4, is now ready to start school and is hoping to build his strength so he can stop using his wheelchair.

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After two years of hospital appointments, a match was found for Harvey

Bahia, 34, from Birmingham, says: "He was diagnosed when I was 20 weeks gone so we knew there would be kidney and bladder issues when he was born. It was fully diagnosed when he was born", reports the Birmingham Mail.

"His bladder was severely larger and his kidneys were damaged, I don't think anything can prepare you no matter what anyone tells you.

"I have not been back to work since having Harvey so it's been a long maternity leave! My life is Harvey's life and it was the stress of not knowing if he will be poorly or well.

"Not being able to plan ahead because he could be in hospital or have an appointment. The constant worry of 'is he going to be ok'."

Up until two years old Harvey was stable enough for medication although the family spent more time in hospital than at home. The baby even spent his first Christmas in intensive care, which his mother called "the worst time of my life. "You go numb, you don't have emotions," she added.

Mum Karenjit Bahia is urging people to sign the donor register

Eventually, his kidneys completely failed and he was put on dialysis, but this was not a long-term solution, Bahia was told he needed a new kidney. Despite all of this, he never stopped smiling.

Bahia said: "He was a fantastic child and baby, he was always happy and only cried if something was really wrong with him. He was also very oblivious to his health problems. Nothing seemed to faze him and he just got on with it.

"Even now he loves going to hospital. He wasn't allowed to get wet so no baths, showers, water play or paddling pool. Trying to explain to a toddler they can't get wet is quite hard without making them feel different.

"They told us we would wait longer as we are of Asian heritage and unfortunately Asians don't donate. We are having to wait longer than those of a different ethnic background.

"I was not well enough to donate to Harvey which was heartbreaking knowing I could not help my own son. We campaigned for Asians to donate and dialysis is an option but not cure, there is no life for a child in hospital on dialysis.

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"In 2.5 years of waiting we never once got a phone call saying there was a match."

Two months since his operation, Harvey is now building his strength back

She points to a number of reasons donors are so low among South Asians including lack of education on organ donation, lack of conversations, religious reasons or fear. The mother defiantly said: "If you are willing to receive you should be willing to give.

He adorably calls his new kidney "Mr Winky" according to his mum. What is Bahia's final message to people on a waiting list?

"Don't give up, have faith, everything happens for a reason. I know that doesn't always apply to everyone and not the easiest thing", says Bahia.

"Harvey’s transplant date was cancelled twice, so every person's time will come. Just keep raising awareness. If you are considering donating just see the change that can happen in people.

"By being an organ donor you can give the gift of life. You can change somebody's life, still live your own life and savour life."

According to annual figures published by NHS Blood and Transplant on July 12, there are currently over 7,000 people on the active transplant waiting list in the UK. More than 1,200 patients are from the Midlands with 522 in East Midlands and 701 in West Midlands.

Although there was a 5% increase in the number of patients whose lives were saved or improved through an organ transplant in the last year, opportunities are still missed due to families declining to support donation.

Sign-up for the organ register here.

Husna Anjum