'Talk to your loved ones about organ donation'

A man from Surrey who suffered a cardiac arrest aged just 12 is urging people to realise the importance of talking to relatives about becoming an organ donor.

Now 21, Soban Saqib is currently awaiting a potentially life-saving transplant having been told his inherited genetic condition has left him with end-stage heart failure.

More than 700 potential donations did not go ahead between April 2021 and March 2026 because families did not know their loved ones' wishes, according to NHS Blood and Transplant (NHSBT).

"The thing about organ donation is that people don't think about it until it impacts them and their relatives," said Saqib.

It is no longer necessary to register as a donor since the introduction of the opt out system, which means you are considered to agree to become an organ donor when you die, unless you have recorded a decision on the NHS Organ Donor Register not to donate (known as opting out) or are in one of the excluded groups.

Saqib says he has hypertrophic cardiomyopathy, which causes the heart muscle to stiffen and thicken, making it harder for the heart to pump blood effectively.

During his cardiac arrest as a boy, he says his heart stopped beating for 16 minutes and his father had to give him CPR, an ordeal which caused him to suffer post traumatic stress disorder (PTSD).

"I was worrying about dying at the age of 12, which is something no young person should ever have to think about," said Saqib, who went on to study nursing.

But in the final year of his degree he was told his condition had worsened and he would need surgery.

"This condition has been part of me my whole life and from very early on I was told I'd need a transplant - I just never thought I'd be in my 20s."

Venice Coleman, from Sittingbourne, in Kent, is also urging people to discuss organ donation after losing her husband Dave in 2021.

"After developing cardiomyopathy he was placed on the urgent heart transplant waiting list during Covid and needed medication 24/7 to keep him alive," she said.

But, despite receiving seven calls for a potential donor match - one of which was compatible - complications developed and he died.

"Talk about donations with your loved ones and live your life, because it's very precious. Tell people you love them," added the mother-of-two, who is publishing a book about her experiences, called Firecracker Warrior.

The NHS Blood and Transplant (NHSBT) says organ donation rates have fallen in recent months and are currently 9% below the same point last year.

Meanwhile, the UK transplant waiting list continues to grow, with over 8,700 people awaiting life-saving transplants.

Specialist nurse, Kim O'Connell, said: "We want everybody to register their decision to donate and speak to their families about it.

"It takes two minutes to register, but that decision can save up to nine lives."

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