‘We lost our children too soon – but knowing they saved others helped us cope’

Organ Donation Week gives those who have received the ultimate life-saving gift the chance to share their incredible stories. But less talked about are the donors, and the people who have perhaps one of the most important roles in the organ donation process – their families.

Behind every person who goes on to save a life through organ and tissue donation is a family who agreed to it after their loved one’s death.

In 2002, Rebecca Patel and her family were faced with this choice in the darkest moment of their lives. Her 14-month-old daughter, Zara, fell ill with an unknown infection. They faced every parent’s worst nightmare when they found her unconscious and were unable to bring her around, rushing her to the local hospital.

Rebecca told the Mirror: “She was taken straight up to Resus and [the medical staff] kept asking me, ‘Where’s the rash?’ and I thought they were thinking she had meningitis but she didn’t have a rash.”

Zara was transferred to Great Ormond Street hospital where she was treated in the intensive care unit and placed on a ventilator. After multiple brain scans that came back clear, doctors decided they were going to attempt to wake her up. But before they were able to, things took a turn for the worse.

“Something happened to all of the monitors. They took her for another brain scan but they wouldn’t tell me the results until my husband came back,” added Rebecca.

“Then we all sat in a room and they said they’d reviewed the results and then they said ‘We suspect she is brain dead,’ I needed them to repeat it back to me. They said they were going to leave her overnight and do some more tests in the morning.”

The next day, a final brain scan confirmed Zara’s brain death. Organ donation was discussed with the medical team and both Rebecca and her husband were faced with the difficult decision but soon agreed for their daughter’s organs to be donated.

“We completely agreed with organ donation. There was no there was no umming and ahhing about it.”

Zara then went on to donate her heart and a lobe of her liver to save two people’s lives, including another baby girl who is still alive and well today.

Rebecca says Zara’s donation has helped her cope with her daughter’s death. She saidL “It has made it so much easier. I’m absolutely convinced. It’s a comfort, that’s all. It is an absolute comfort to know that part of her is still living on in other people. And it’s been a massive comfort to our family as well.”

Lisa Wilson from Hornchurch, east London, and her family also suffered a devastating loss when her son, Tom, died in a freak hockey accident at only 22.

Lisa told the Mirror: “He went to hockey training one night, he wasn’t supposed to be playing because he had an injury but someone asked him to go on the pitch as a passive defender.

“Out of the blue, he didn’t even see it coming, a young man did a reverse stick shot which caught Tom on the back of his head.”

The single, accidental blow caused Tom to instantly fall to the floor and he suffered a subarachnoid haemorrhage. His heart stopped too and despite his teammates administering CPR, they were unable to save him and he was declared brain dead at the hospital.

“They told us from all the scans there wasn’t anything they could do and they could see that the haemorrhage was too severe. And I think at the time I wasn’t believing it, I thought this was just a nightmare.”

Lisa’s husband first brought up organ donation: “In the middle of the night, he sat up and said ‘there isn’t anything anyone can do for Tom now but there is something Tom can do for others: organ donation’. I knew my husband was right. And I’m really grateful he suggested it.”

When Lisa and her husband broached the subject, medical staff quickly found out that Tom had signed up to the organ donor register. “We found out Tom signed up as a fresher at university when he was 18. And I was amazed. I was so proud of Tom at that point.”

This helped them confirm their decision and Tom went on to donate all of his organs, saving the lives of nine people and, through tissue donation, improved the lives of more than 50.

Tom’s donation also brings his family much needed comfort. Lisa said: “You know, it was a tragic accident, but at least we made a decision which brings us much comfort that people are alive now because of Tom it was the best decision we could have made.”

Both mothers admitted that organ donation was something that was not on their radar before losing their children and stressed the importance of talking about it with your family.

In May 2020 the UK organ donation became an opt-out system, meaning everyone over the age of 18 in the UK is now automatically on the organ donor register unless they choose to actively opt-out. But its a little known fact that your family will always have the final say as to whether you go on to donate your organs – no matter your status on the register.

Lisa explained that if Tom hadn’t signed up to the register, then they would have struggled to make the decision on his behalf. She stresses that it is so important to make your wishes known and to not be complacent about the new opt-out system.

“I don’t think it’s enough. I think people I’ve spoken to just think they don’t need to do anything else; they’re on it [the organ donor register]. And they don’t realise that your next of kin could actually reverse a decision in intensive care. I think that’s crucial.”

Rebecca agrees, saying: “And I actually don’t think it would ever be on most people’s radar. It wasn’t on my family’s. It’s not something that’s talked about until it touches your family.”