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Catherine and Tom - Interview 13

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.
 

 

The ICU had no suitable room for relatives who needed some time alone. Though the staff’s care of...

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Catherine' The first night of John being in intensive care I said to Tom, I asked if there was somewhere where I could just lie down, because I felt sick. I was sick in my stomach. I thought I was going to faint a couple of times.

And I was told where there was a little room, still on the main intensive care unit, but a little side room, which was a store room. And there was just all sorts of bit’s and pieces in it, not conducive at all to someone needing just a little quiet time and to some form of just space. And not all this sort of old pieces of equipment, or feeling as though they were going to fall on top on you. It was dreadful, it was really dreadful.

And the nurses didn’t have really much to say. They came and they did John’s blood pressure and pupils and all the vital signs that they were recording.

Tom' I remember looking round at the ward and to me standing there, there was no humanity on that ward. Everyone was doing their job professionally. No one came to see if we were okay. The room Catherine said, they let us go into, we were constantly disturbed by people coming in to get this, that or the other.

I think if I had to sum up that period I would say it was professional but there was no humanity shown, except for that young girl [a nurse]. And I would even include, because I’m not a Catholic, but I would include the Priest and he came in, did his duty and went off. And he was probably embarrassed about the whole thing.

A lot of the nurses seemed embarrassed. I remember thinking afterwards that the one thing they simply do not seem to be trained in is dealing with death. They did now know what to say.
 

 

John had carried a donor card since he was 16. Going through his personal things to find his...

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He [doctor] then said, “Have you ever given organ donation any consideration?” And at that moment I remember thinking, John has carried a donor card from the age of 16. He came home from school at that time and said there had been an educational input about organ donation, and he talked to us about it. And I said to him at the time if that’s what you would like, I had never even, nursing I hadn’t actually never thought about organ donation I have to say.

But if that’s what John wanted to do, he said that’s what he wanted to do, but he didn’t want that, you know should he die, he didn’t want his eyes to be removed. And he’d crossed that out on the card, so we knew that.

So when the doctor mentioned organ donation, all of a sudden I was like, “Oh yes, John carries a donor card.” But it just did not hit me that my John had died. I was just, I was so proud to say, “Oh yes John carries a donor card,” but the realisation, what did those words mean, what did they mean?

So obviously they knew that all, well it’s not all that obviously they knew, I had to carry out John’s wishes and I didn’t have to make a decision whether I wanted John’s organs to be donated. John had made that clear that that was his wish on his death.

And the one thing that I needed to do, even though I had given the doctor the information that yes John carried a donor card, but the one thing that’s so important for me, was that I’d actually found John’s donor card.

I know that wasn’t necessary for the clinicians at all, but it was so important for me, because we hadn’t talked about organ donation for a long time, and I knew when John was sixteen but this was eight years later. I think somewhere in between those years, there may have been something in the press and we would have talked about it, but we hadn’t for quite some time. And I didn’t think that John would have changed his mind and thought, “Oh no,” and perhaps ripped his card up. But I just needed to find, I wanted to see John’s writing, I just wanted to have it.

And the first thing that I did was to look for John’s card, and I found that and it was so awful because, in as much that I would clean John’s bedroom and I would change his bed and I would clean his windows and all the rest of it. I never went through any of his personal things.

So it was so foreign and just awful, I just needed to do it. So I started with his wallet and it wasn’t in his wallet, but it was actually in his driving licence, inside his driving licence.
 

 

For Tom, an organ donation death is different from a normal death because a family can be...

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Tom' There is a point I would make here, that since then I’ve been asked many times, “Well there’s no difference between losing any loved one, and whether organ donation’s involved or not.” And looking back you think that’s not true. I knew the minute it was mentioned that in this particular case we would have to have, or give the final decision. Not so much about organ donation, but whether to switch the life support system off. And that involves you in their death. That brings you culpable with their death. Because you never know is he dead? They do the brain stem tests. And you sit there and you see John laying in bed, occasionally moving, and you want so hard to believe he’s going to open his eyes any minute.

And I remember thinking, “If it comes to the time of switching off, would I have the courage and could I ask that I did the switching off?” I bottled out on that. But that was for me. For Catherine it would have been a thousand times worse, and you live with that the rest of your life. You are never sure.

And we remember and I remember how this has affected Catherine, a case in France where somebody had been in a coma for eight years, and then he woke up. How the hell do you deal with that? Yet all the facts were there, everything’s there. You know logically everything, but deep down you think did I do the right thing?
 

 

In 1995, Catherine was given very little information about the recipients. She feels that donor...

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One of the things that caused me great pain was that I asked a very, very basic question, not to be intrusive at all. I understood that. “Can you tell me who received John’s heart? Was it male or female? And what age range for each of the organs that John gave a gift. That was the only information I wanted. And I was told, “You do not ask questions like that. You are not to have that information.”

And at the time, it is fifteen years ago, certainly if there was one transplant co-ordinator, Tom may be clearer on that, but the chap that I spoke to was not a co-ordinator, he was very much involved in not the hospital where John died, but another hospital. He was very much involved with collating that information. Not necessarily in the clinical setting of when transplants were taking place. And he was the person who said, “You are not to ask those questions.” He was dreadful. It was so dreadful.

I had a lovely son and he did exist for 24 years. And through his gift of life I would just like to think that a co-ordinator [specialist nurse] through their database, whatever, however clinical that has to be, but that that is a possibility that they would have it. That, yes, there are families that would like just a phone call once a year either on the day the gift of life was made, it doesn’t have to be, I mean for John it was very close to his birthday. But, you know, that was the day the gift of life was made.

But something as simple as that, it doesn’t have to be a great big gesture. It’s just something that’s very simple that fifteen, twenty years down the line, that my John’s gift of life is still acknowledged. And in the way that you just make a phone call, you don’t have to send a card, just a very brief phone call or maybe they would like to do a card, whatever. But I think that we’re not here as donor families just for the first month and the first six months. We do exist and we carry that pain, and the joy that hopefully does come out of the pain, that other families have gained from that.
 

 

Tom said that organ donation is called ‘the gift of life’ because organs are donated freely by...

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If you receive an organ donor heart or something like that, you knew somebody had died, there was no question about it. For you to live with that, it was important that you knew that whoever donated it did it freely without any sort of pressure brought on them. And that it was the ultimate altruistic gift, without knowing who it was going for, without knowing, well with knowing you would never get any thanks.

You have decided to donate, so whoever receives that knew that it was with your blessing. Hence ‘the gift of life’. Gift was very important in that. And that’s for the recipient that they can actually live their life knowing that they have not caused the death of anybody else. They have not benefitted from the death of anybody else, but they have benefitted from the gift given early on, when they were fully aware of what they were doing and why they were doing it. Hence ‘the gift of life’.
 

 

Catherine’s son, Tom’s stepson, looked asleep. When Tom couldn’t rouse him, he put him in the...

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I passed John’s bedroom and I could see him laying on the bed, in his shorts, he’d obviously had a shower. And he was snoring, but I thought it was snoring. So I just left him, and I put my briefcase in the study, took my coat off. And came downstairs again. But Gemma [our dog] wouldn’t come down with me, as she stayed upstairs.                                 

So I think I put the kettle on, made a cup of tea. I then went back upstairs and walked into the study, and John was still snoring away, so I thought I’d wake him up and make a joke about it. But I couldn’t wake him.

This little bit I’m not sure how I feel about this, maybe it’s my background training, well I don’t know but my mind suddenly went very cold, very clinical, and suddenly it wasn’t John there on the bed. It was somebody and there was something wrong. He had a pulse, he was breathing a bit heavily, that’s why I thought it was snoring, slight amount of spit at the side of his mouth.

So I moved him into the recovery position, phoned for an ambulance straightaway. And I told them I couldn’t wake him, and he said an ambulance would be with you very shortly. “Had I put him in the recovery position?” “Yes.” “Did he have a pulse?” “Yes.” And all the questions.                   

I then phoned Catherine [my wife] and told her what had happened. I then went downstairs, next door and asked them to look after Gemma, which they did. And in a matter of minutes the ambulance came.

The medics came up and did a quick check, checked the eyes. I don’t know what the results of that was, but they checked the eyes. One of them said to me, “Do you know if your son does drugs?” And I remember thinking at the time, I’d bet my life that he did not do drugs, but I wasn’t prepared to bet his. So I said, “No, not as far as I know. I doubt it, but I can’t give you a guarantee.” So they said, “Fine.” They took him downstairs.        

Now up to then I think he’d been playing, maybe he’s just exhausted. But I didn’t know why. I think, I didn’t know what to think at that time. I was just not sure what was happening.                   

They took him into the ambulance and asked me to stay outside. I remember Catherine arrived and, as she said, and the doctor came out and he looked as though it wasn’t good. And he said they were going to take him to hospital. Would one of us care to go with him? And I thought well, I don’t know what’s happening so I thought I’d better go and Catherine could follow. So we went off into the ambulance.
 

 

Catherine talked to various people shortly after her son’s death in an attempt to work out how it...

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There was some comfort strangely enough, even the devastation of his death, but there was the comfort first of all that his collapse could have happened in a very different place. He could have been out training. He could have been out cycling, because he cycled as well as part of his training. He could have been driving the car. He could have been out with Gemma [the dog] and collapsed.

But he’d come home. He’d been to the dentist that afternoon for a check up. He’d had flexi-time from work. He’d had a pint with his colleagues over the lunchtime and then he’d finished work, as I said on flexi-time. And a neighbour across the way had seen him, but she can’t recall whether Gemma was with him.

So it was either when he was coming back from being to the dentist, because he would have called there on his way from work, or whether he’d been out with Gemma. We don’t know whether he’d actually got Gemma out for a walk or not. But she takes comfort out of that, that she actually saw him walking past and spoke to him.

I think it was the sister that first met me in the A&E [Accident and Emergency] department, she said, “It could have happened as John was coming down the stairs.” The actual, John’s haemorrhage was caused by an AVM which is Arterial Venus Malformation, so he’d had it from birth, and it could have gone at any time. But as she pointed out, if we’d have found John at the bottom of the stairs, would we have wondered had he tripped and fallen down and banged his head or…?

My sister who came over, her daughter is a GP, and in the early days I spoke to [my niece] and I said, I needed to know if John had been in any pain. What she said, he would have had a headache, but the headache would have been that the headache was there, but the actual haemorrhage would have been, and he wouldn’t have felt anything. It would have been just so quick.
 

 

Catherine wasn’t ready to hear about the recipient’s grandson. It was painful for her, and she...

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We were getting very close to that [meeting up] and then a letter came and, as I opened the letter, two photographs fell out. And I thought, “What’s this?” And it was of his [recipient’s] 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. I went, I really, didn’t I Tom? We had been in bereavement counselling for five years and the time obviously, the gaps in between had increased, but I needed to contact my counsellor to see if I could have just some more sessions. I needed to talk about this. And the co-ordinators [specialist nurses] did not want to know. They told me, and the reason that I contacted my counsellor was they told me that they’re not counsellors.

They’re there for the clinical setting, they’re not there to, I wasn’t expecting them, but I felt that that perhaps that’s a lesson that they needed to learn, that maybe that letters should be vetted that little bit longer. Or that recipients should be told you know, I felt I needed to meet this chap and see him before I was going to see his extended family. I really was not ready for that.

He wrote, he obviously was an intelligent man, and I’m not saying that if he hadn’t have been either that would have excused him for that. But 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. And that, you know, when you get yourself to a place of where you’re going to meet someone who, that through the gift that your son gave that he has a good quality of life, and I wanted to see that, and then much further down the line hear about his extended family and the joy of a grandson. I wouldn’t want to take that away from him at all, but not at that point.
 

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