Organ donation

Catherine and Tom - Interview 13

Male
Age at interview: 63

Brief outline: Catherine's son and Tom's stepson, John, sadly died of a brain haemorrhage in 1995, aged 24. He had carried a donor card from the age of 16. Catherine and Tom are very proud of John and the 'gift of life' he gave to five people.

Background: Catherine and Tom are married. Catherine is a phlebotomist. Tom is a retired IT consultant. Ethnic background / nationality' White British.

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Catherine’s son and Tom’s stepson, John, sadly died of a brain haemorrhage in 1995, aged 24. John was Catherine’s only child and lived at home with them. Catherine said that John had always been sociable, healthy and sporty. She and John had planned to attend a family wedding in America, something they had both been looking forward to for some time. 

On the day John died, Tom found him lying unconscious on his bed. He tried to rouse John but was unable to. He put John in the recovery position and called an ambulance. John was rushed into hospital, where Catherine and Tom were advised to let other family members know that he’d had a severe brain haemorrhage. A brain haemorrhage is a serious, potentially life-threatening, condition where blood leaks out of blood vessels over the surface of the brain.

This came as a huge shock to Catherine and Tom as John had always been very healthy. John was in intensive care for two days but, sadly, died. When doctors asked whether they had ever considered organ donation, Catherine and Tom knew that John had carried a donor card from the age of 16 and had been in favour of it.

This was an extremely traumatic time for Catherine and Tom. Giving medical staff permission to switch the life support machine off was very difficult and something that played on Tom’s mind for a long time.

Catherine and Tom felt that the medical staff in intensive care were very professional but had given them little comfort or support – apart from one young nurse who allowed Catherine to take locks of John’s hair. They stressed the importance of doctors and nurses approaching organ donation as an emotional as well as clinical subject.

Catherine and Tom said they were given very little support and information from the specialist nurses [donor co-ordinators] but hoped improvements had been made since 1995. As Catherine put it, ‘I firmly believe that, at that time, the only people who were really to be considered were the recipients. I really felt that donor families were there to be seen but not heard.’ Catherine feels that it would be helpful if donor co-ordinators contacted donor families annually, by card or phone, on the donor’s birthday or the day they donated their organs as an acknowledgement of their vital role in the organ donation process.   

John’s funeral, sadly, took place on the day of his cousin’s wedding in America. The trauma of his death had a huge impact on Catherine and Tom’s lives and marriage, and they gained some support from bereavement counselling.

A couple of years after John’s death, Catherine wanted to know more about the recipients of his organs but was told by a donor co-ordinator that this would not be possible. Later, she and Tom met other organ recipients through an event organised by the British Organ Donor Society, a charity that aimed to promote organ donation and provide support to donor and recipient families. There, they spoke to a kidney recipient, who was very grateful to them and other donor families for consenting to the donation of their loved one’s organs. Catherine said this was the first time she’d really heard, from a recipient’s perspective, what life had been like for them before and after transplant. The recipient’s gratitude was a great source of comfort to her.     

Catherine said that John gave ‘the gift of life’ to five people. Sadly, two of the recipients, a heart and a liver recipient, died. Catherine and Tom received a letter from one of the kidney recipients, which Catherine found very upsetting. They kept in touch with this recipient by letter and, at a later stage, planned to meet him. However, when they received a letter containing photos of the recipient’s grandson, Catherine found it very distressing. She said, ‘A letter came and, as I opened the letter, two photographs fell out. And I thought, “What’s this?” And it was of his grandson. And I can assure you I was not ready to receive that because, as a mother whose only child had died, whose vision for the future was to be a Grandma, I was not ready for that at all. And that set me back five years… There were some things in letters that I thought, he’s not being very sensitive to my situation. And I felt at that point that the contact had to stop.’

Tom and Catherine have been involved in raising awareness of organ donation and continue to promote it. They are very proud of John and the ‘gift of life’ he gave to five people.
 

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