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Mum makes plea after two year hunt for kidney for son

Karenjit Bahia’s life took an unexpected turn when her son was diagnosed with kidney failure shortly after birth. Baby Harvey’s need for a new kidney was a devastating blow to a family with no history of serious health issues.

However, their journey towards finding a donor proved to be a challenging one, especially as an Indian heritage family, as the average waiting time for a suitable donor is longer due to fewer donors in the South Asian community.

After two years of hospital appointments and tearful family holidays, a relative came forward and generously donated a healthy kidney to little Harvey. Now, at the age of four, Harvey is full of smiles and ready to start school, embracing the opportunity to live a normal life once again.

Karenjit Bahia, a mother from Coventry, now wants raise awareness about the importance of organ donation within the South Asian community.

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Reflecting on the initial diagnosis, Karenjit said: “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. His bladder was severely larger and his kidneys were damaged, I don’t think anything can prepare you no matter what anyone tells you.”

Karenjit, who put her career on hold to care for Harvey, described the emotional toll of not knowing whether her son would be well or unwell, the constant uncertainty that prevented them from making plans, and the constant worry about his well-being.

She vividly recalls spending more time in the hospital than at home during Harvey’s first two years, with even his first Christmas being spent in intensive care, which she describes as “the worst time of my life.”

Eventually, Harvey’s kidneys failed completely, and he had to undergo dialysis. However, this was not a long-term solution, and Karenjit was informed a new kidney was urgently needed. Throughout the entire ordeal, Karenjit 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.”

Karenjit also highlighted the additional challenges faced by South Asian families in finding organ donors. She explained: “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.

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

She said a lot of factors led to low numbers of South Asian donors, including lack of education on organ donation, lack of conversations, religious reasons or fear. She said: “If you are willing to receive you should be willing to give.”

Heartbreakingly, Karenjit was unable to donate her own kidney to her son. However, she and her family campaigned for more South Asians to become organ donors.

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After waiting for two and a half years without receiving a single phone call about a potential match, a miracle occurred when Karenjit’s sister, Pam, was found to be a suitable donor. Following extensive testing and checks, Pam donated a healthy kidney to her nephew in May. Now, two months later, Karenjit has noticed a remarkable difference in Harvey. His energy levels have increased, and he will soon be strong enough to abandon his wheelchair.

In a heartwarming twist, Harvey affectionately refers to his new kidney as “Mr Winky,” according to his mother. Karenjit’s final message to those on waiting lists is one of hope and perseverance. She urges them not to give up and to have faith, emphasising that everyone’s time will come.

She shared: “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.

“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 recent figures published by NHS Blood and Transplant, there are currently more than 7,000 people on the active transplant waiting list in the UK. In the Midlands alone, more than 1,200 patients are waiting for a transplant.

While there has been a five percent increase in the number of lives saved or improved through organ transplants, there is still a need for more donors, as opportunities are missed due to families declining to support donation.

This article was crafted with the help of AI tools, which speed up Express.co.uk’s editorial research. A news editor reviewed this content before it was published. You can report any errors to [email protected].

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  • Posted on July 26, 2023