Organ Donation Week: Parents describe 'only positive' to come from 25-year-old son's sudden death

In 2017, Jamie hit his head during an epileptic seizure and suffered a devastating brain injury. Credit: Family photo/Aneurin Bevan University Health Board

A family whose 25-year-old son died after suffering a catastrophic brain injury say being able to donate his organs was their only source of comfort after his death.

Rob and Sue Edwards, from Newport, lost their son, Jamie, in 2017 following an epilepsy-induced fall at home. When Jamie arrived at the Royal Gwent Hospital, he was in a critical state and induced into a coma.

A brain scan revealed that his devastating injuries would seriously compromise his quality of life if he were ever to wake up.

His family agreed to turn off his life support and Jamie died on 3 October 2017.

After the sudden tragedy, Mr and Mrs Edwards were asked whether they knew if Jamie was on the Organ Donation Register.

Jamie’s dad said: “It’s something we knew he wanted, at whatever age he was.

"Of course, when he joined the Organ Donation Register, I don’t think he expected to be donating so soon, but we were certain of his decision.

"What’s the point in taking something with you that you don’t need? We told them they could take what they needed."

He added: "The way they did everything at the hospital was fantastic.”

After his death, Jamie's parents found comfort in knowing his decision would help save the lives of others. Credit: Family photo/Aneurin Bevan University Health Board

Jamie's kidneys, as well as some of his tissue, were among the donations made.

Knowing that their son was helping save the lives of others provided the family with solace following their loss.

Speaking of the experience, Mr Edwards said: "You do feel better. It brings some comfort and it’s the only positive thing you can take out of something so devastating, which is why we only see it as a positive thing that Jamie was able to donate his organs.”

After Jamie's death, his parents decided they too would ensure they were on the Organ Donation Register.

Jamie's dad said: "A few days after Jamie passed away and had donated his organs, myself and Sue both updated our details to make sure we’re opted in to donate our organs as well.”

Sharon Keightley, a Specialist Organ Donation Nurse covering the Aneurin Bevan University Health Board area, said: “I look after families who, in their darkest time of grief, support a loved one’s decision for organ donation.

"Then we hear that a child has had a new heart or lungs, or someone has received the gift of sight through cornea donation. It can make a real difference.

“My main message to everyone is to register your decision on the Organ Donation Register and talk to your family and leave them certain of your decision.

"Your family won’t know how you feel about organ donation unless you tell them, so please talk about it.”

Throughout Organ Donation Week 2022 - which takes place the week beginning 26 September - the NHS Blood and Transplant Trust are urging everyone to update their preferences on the Organ Donation Register.

Nurse Sharon Keightley is urging everyone to register their organ donation decision. Credit: Aneurin Bevan University Health Board

Changes in the law in 2015 mean that individuals who are over 18 in Wales and not part of an excluded group are automatically opted in to donate - unless otherwise stated. However families can override that decision if they are unsure what their loved one wanted.

This is why the trust is also reminding everyone to ensure that their family are aware of their decision.

You can check or update your details on the Organ Donation Register via the NHS Blood and Transplant website.