Craig and Sandra - Interview 07
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Craig and Sandra consented to donate their 11-year-old daughter’s organs in 2008 when she, sadly, died of a brain haemorrhage. Their daughter, Rachel, had discussed her wishes with them in the past, knowing that her grandfather had died after having two kidney transplants. Craig and Sandra had talked openly with their children about transplants and organ donation because Craig’s dad had died after many years of kidney problems.
At the age of 11, out of the blue, Rachel had a brain haemorrhage and was rushed into hospital. A brain haemorrhage is a serious, potentially life-threatening, condition.
Doctors told Craig and Sandra that the bleed had been very extensive and, sadly, Rachel died in intensive care. Craig and Sandra had approached medical staff about organ donation and consented, knowing Rachel’s wishes. They involved their son, who was 13 at the time, throughout. Sandra said that she was surprised at the amount of paperwork involved with consenting to organ donation. For Craig, it was hard to believe that Rachel was no longer alive because she looked as if she was just asleep and was warm to the touch. Brain stem tests had confirmed that she was no longer alive. With hindsight, they felt that it would be helpful for families to know that, even when a loved one looks alive at this stage, they are only kept breathing because of the ventilator (life support machine). It can be distressing leaving them when they still ‘look alive’.
Craig and Sandra praised the care Rachel had received from doctors and nurses and the support they received from the specialist nurse (co-ordinator). This was an extremely difficult and traumatic time and Craig said that organ donation ‘was a very small positive thing that happened that day, out of something that was immensely negative and tragic.’
Rachel was a very popular girl and the funeral was a celebration of her life. Craig, Sandra and their son keep a memory box of the special things that relate to Rachel, who will always be an important part of their lives.
About five months after Rachel’s death, Craig and Sandra received a letter, via the specialist nurse, from one of the recipients – a man who’d received one of Rachel’s kidneys and her pancreas. Sandra said that this ‘was just amazing’ and they had really valued hearing from him. Sandra said they would like to hear how all the recipients are getting on and were thinking of writing to them through their co-ordinator.
Craig and Sandra are now involved in promoting organ donation and, as well as talking about their experience in the media, have also been involved in helping make an education pack for schools in Scotland.
Two consultants carried out a set of tests independently and confirmed that, sadly, Rachel had died.
Craig' It wasn’t till later on in the day they said, “Look we’re going to start doing the brain stem tests.” And they did the first one and there’s got to be two consultants. They do have to have two consultants that do the tests. And I think there was, we were not present. They said, “You don’t need to be.” And then I think they take the ventilator out and things like that, and see if the body is going to breathe for herself. And one of the consultants thought, “I think she’s still breathing.” The other one didn’t but one did, and because there’s that bit of doubt they continued to ventilate her and they’ve got to go through a certain, another set of tests, or the same set of tests in
Sandra' It was half an hour later.
Craig' Half an hour later.
Sandra' Yeah it has to be.
Craig' So they told us that and then they did the second test and they came back and said, “No, she’s brain stem dead.”
Rachels grandfather had had a kidney transplant. At the age of seven, she told her parents that...
Regarding organ donation, well my father had a kidney transplant when I was, he was on dialysis, and then he had a kidney transplant when I was very young. He was only born with one kidney and he was basically very ill. And latterly he went onto dialysis and he got a kidney transplant that worked for about a year and a half. And also then the body rejected it and then he got another one, and that rejected right away.
But there is a big difference to our quality of life, the whole family’s quality of life when he got a new kidney. Before that we were tied to a kidney machine, or a dialysis machine three times a week and we were limited with holidays. We couldn’t really go anywhere. I think the only place we could manage was St. Andrew’s, and there was a Kidney Patient’s Association house. But everybody else was going away to Spain, places like that, and the farthest we could go, they didn’t have, it wasn’t so advanced as it now.
Sadly, my dad died when I was eighteen and that was a long time ago, over 27 years ago. When I got married, I had two children, in fact my two children openly discuss things with their grandparents how they’ve only got one gran and one granddad from another side, but they don’t have four grans or granddads like other people have. And seen photographs of my dad. And children being children are very inquisitive and want to know what happened to them and why did they die and all these kind of things.
So we’d openly tell them about my dad and about how he died and why he died; and because he was so ill, and the difference that an organ, he got a kidney and that helped him for a long, for a year and a half he had, made quality of life a lot better.
It was just one of these things where it was just discussed and later on, it was maybe a couple of days later, all of a sudden my son and my daughter had probably been discussing it. And we came in one day, or they came in one day, and my daughter said, “Look, just to let you know, if I die I want my organs, or I want my, all my hearts and liver and my kidneys to go to other people to help them live.”
She was only 7 at the time and we kind of laughed, not laughed at her, we didn’t discount it but we said, “You know, that’s not going to happen to you because we’re the old people in the house. And you’ll be telling the doctors to take our organs and to give the organs to other people.” And she said, “Well I want that to happen anyway.” So we had, no she was like, “Okay.” And we put it to the back of our heads because you never ever think anything like that is going to happen. Later on down the line obviously that kind of did happen.
Craig and Sandra felt that donating corneas would make a big difference to someones life. At the...
Sandra' The bit I found quite daunting, but at the time I’ve got to say it’s the kind of paperwork you have to do. You don’t realise just how much paperwork you have to go through. We’ve committed to organ donation, that kind of, I felt was a lot. I know I can understand now, but at the time it was quite long and drawn out. And they’re asking all these kind of different questions. I mean even me, at that point, I was thinking, “They need your organs.” I didn’t think about tissue donation at that point, but obviously that’s something as well that came into it.
So you’ve got to go through all these things, whether you want to donate your heart, the lungs, they go through all the organs, through all the tissues, and Rachel had asked that her eyes weren’t used because she thought...
Craig' I think it was because it just said on the donor card doesn’t it? It says on the donor, you know, if you look at a donor card it will say, “Lungs, heart, liver, kidneys, and eyes.” And she says “Take out that bit, they’re not taking my eyes.” It was just, she’d a kind of brown fleck in her eyes.
Sandra' Wee Madeline McCann, you know that kind if thing. And she was dead proud of that.
Craig' Yeah, she had blue eyes but one eye had a brown fleck, just a wee stripe wasn’t it?
Sandra' A ha.
Craig' She says, “I don’t want anybody to touch my eyes.” And I said, “Oh, that’ll, that’ll never happen, so you don’t need to worry about that.”
Sandra' And I think that kind of came from me as well because, as a kind of Catholic upbringing and obviously kind of silly, you’re told the eyes are the gateway to the soul. And said, “You know we’ve always talked about organ donation in front of the kids, and not my eyes, not my eyes.” So I think in a way that kind of came, but I now kind of regret that a bit because I think that’s something that people tend to not do, and I think that’s something...
Craig' It’ll make somebody’s life a lot...
Sandra' and make a huge difference. But under these circumstances obviously, as I say, you’re not thinking straight. You know with all the things, but I do, that’s one of the things I do regret not doing. And I think if Rachel thought about it, she would have done it anyway. But, as I say, I think she kind of followed onto it, she was just listening to what Mum said about that.
Leaving Rachel was heart-wrenching. She looked as if she was sleeping. Her skin was pink, her...
Sandra' It’s very traumatic because as Craig said you’re taken away, I mean I knew Rachel was going, I knew it was the ventilator, but Craig was still seeing his daughter still breathing, still warm I think. And we were signing these kind of things, these forms, and that is a difficult thing that parents or families might find difficult. That is something maybe they should be aware of, that.
Craig' Or that’s sort of, I certainly felt guilty for leaving her that night because looking back on her and she’s still breathing and we could stay if we wanted to, but I think we’d had...
Sandra' More [son’s name].
Craig' Oh well my son was there, and, you know actually we were mentally and physically drained, there was nothing left in us. But I felt so guilty and it wasn’t till a couple of days later that the transplant co-ordinator [specialist nurse] was up, and she said, “I got the minister came round.” We’re not religious in anyway, but the school minister was up with us, and Rachel and the school minister knew each other.
Sandra' Rachel worshipped him.
Craig' And he said, “Oh I’ll,” and she said, “Oh it was good the minister came back up.” And we said we didn’t know he’d came back up and he sat with her until they took her to theatre, and it was hours and hours. And I still can’t thank him enough for that. You know, he just sat with her holding her hand and just chatting away, that was the nice thing. The nice guy he was, but I still feel quite guilty for leaving her that day.
Although I was given the opportunity to stay but I just wanted to stay with everybody else.
Sandra' It’s difficult to say, I can understand as I say, I think I was torn as well but I’d got my nurses head on, and obviously my mother’s head on. And I knew she wasn’t there. It was the machine. But, as I say, it’s difficult to walk away and see. She just looked as though she was sleeping apart from the tube obviously from the ventilator keeping her going, she just looked as though she was sleeping.
Craig' I can understand why they’ve got to do it because it buys them a lot of time, rather than having to rush and get things going. It gives them a lot of time to set out to find proper recipients and to get the best possible match they can get and I can understand why, but I found that so hard.
Sandra' And I think families should be aware of that, that they do, that they’ll come and test them, brain stem death, and say that they’ve actually gone. When you’re looking at them, they look as though they’re still there. They’re warm to touch, there’s still a heart beat because everything...
Craig' They’re not dead.
Sandra' You know, everything, the machines are keeping everything going and it’s heart wrenching because you still think your relatives there.
The recipients age wouldnt have mattered to their daughter Rachel. Sandra and Craig explain why...
Sandra' They [specialist nurse] do give you amazing support, and she brought a letter of how the recipients were doing at that point. Obviously some of them were in hospital because it was major surgery that they’d gone through. But it was a brief update.
The one thing that took us back originally when she come out, which we didn’t realise at the time, but again it’s another thing you see, when you’re thinking back. Rachel was the size of an adult. Although she was 12, she was 5’4”. We obviously thought with Rachel being a child, her organs would have gone to children. It’s just one of these misconceptions you have or beliefs. But her organs actually had gone to adults because she was practically an adult herself. And that kind of shocked us initially at the beginning, because we had talked about it to [our son] when we came home. You know, we were saying to him, “Some wee child, some…”
Craig' “Some small boy or small girl will be getting, will be in hospital now, getting a kidney, or might be a heart, a good pair of lungs.” We didn’t know at that stage. “And there’ll be a child’s life saved.”
And when it didn’t happen, when we were told, “No it’s went to,” well her kidneys went to a 36-year-old. It was somebody as old as that. And I think the liver went to someone who was in her fifties, we were kind of a bit taken aback.
Craig' A bit taken aback by it. But looking at… initially, that was the initial shock, but when you look at, these people have got the right to live as well, and some, one of our neighbours said, they said, “Well, I suppose a gran’s got a right. That’s somebody’s gran.” And I thought, well you’re right enough. It was just the natural shock of it all, that took us…
Sandra' Mm. And Rachel wouldn’t have cared who it went to. I mean that was just,
Craig' That was the bottom line. She wouldn’t have cared as long as somebody had benefitted from it.
Sandra knew Rachel was seriously ill but Craig didnt realise until later. They felt the doctors...
Sandra' She was 11 years old at the time. It was her last day in school. The night before she’d asked if she could stay with her Gran because, unfortunately, I was working in the morning. My husband was on the nightshift and my son was, he was in secondary school and he was to go to school. So she wanted a long lie. She didn’t want to get up, she wouldn’t, and her Gran pampered her every night. So they had a girls’ night, so this was her idea.
I used my mobile phone for my alarm clock. So my mobile phone went at half five in the morning and I’d set it for six. And I’d looked at it, and it said Mum’s phone on it. And I just heard my mother-in-law screaming that there was a problem with Rachel. She couldn’t get her awakened.
So I ran out, jumped in the car and my mother in law just stays up the road. And my mum had died of a brain haemorrhage when I was 17, and then when I looked at Rachel I knew there and then, being a nurse myself, that’s exactly what was going on with her.
We called the ambulance crew, who were fantastic and came and they kind of take over and they got her down. And we were taken to the children’s hospital.
In my heart of hearts I kind of knew there was something serious going on, I could see in the background what was happening but, as a parent, you know,
Craig' You’re still hoping aren’t you?
Craig' I mean I took, I went up to my mum’s, and then I went down to get to my son and took him up to my mum’s. And I took her bag up with her nightie and toothbrush, because although, as Sandra said, “Look it’s her brain, something’s wrong.” I thought well she’s taken an epileptic fit. I didn’t for the life of me start to think how serious it was.
I knew it was, I wasn’t out there, it wasn’t kind of an ordinary thing to happen but I knew, I didn’t appreciate how serious it was. It wasn’t until you started to see consultants and people turning up to work at that time of the morning with jeans and a t-shirt and a pair of trainers on that you know that it’s a serious state because these guys don’t get called out as a matter of routine. But they fought like mad to try and save her.
Nurses involved Sandra and Craig in their daughter, Rachels, care. They felt that doctors and...
Sandra' The one thing I’ll say I was so impressed by the hospital was, even though I think they all kind of knew from when Rachel arrived, even though they did the second scan, there really wasn’t much hope, they involved us in the care. The nurses, they let me do her mouth care, her eye care.
One nurse wanted to cut her finger nails. She had long finger nails. I says, [laughs] “If you cut them she’ll come back and you’ll be in big trouble.” Because that was her thing, she loved her long finger nails. But they were so fantastic with her. And there’s a lot of myths about organ donation if you think, people think that you’re going to donate organs or you’re registered as an organ donor, they won’t fight. They fought up to the end with Rachel and, as I say, I’ve seen it in nursing,
Craig' Anything they could have done, they would have done.
Sandra' have done. You know, if they thought there had even been a slim chance of even doing the surgery, they would have went and done it. But the bleed was so far down in the brain that just trying to do the surgery would have done more damage to it. They would have killed her anyway trying to do that.
But they never, never gave up hope for her and, as I say, they were in and turning her, and speaking to her, and they were just absolutely fantastic. I’ve got to say I was so impressed, and they were also touched by it as well afterwards.
Sometimes I’ve seen patients die and people can be so cold towards them afterwards. But they cried with us. And I got a bit upset and was sick and one of the nurses came with me and we were crying. And she gave us scrubs that the nurses wear and with two of us were having a, you know they were so, they were absolutely amazing. They felt it and you felt that, so they cared so genuinely.
Attending meetings where donors families and recipients could meet helped them to understand each...
Would you have liked to have heard from them?
Craig' I think that’s one of the things that all organ donor families want to do. It’s certainly at this gathering, there was forms to fill in to, if you wanted to go, and it was any questions you want to ask. And by far the predominant question is, “Why don’t the recipients write to us?” They don’t know. We want to know what’s happened and how they’re getting on.
Sandra' And that’s come out very strongly.
Craig' It’s very, very strongly.
Sandra' At a lot of these things we’ve gone to,
Craig' Yeah, and they don’t get the letters back, and a lot of the time it’s to do with the guilty feelings and they don’t want to open up the old wounds. I’m not saying that all recipients are just expecting the organs, they certainly don’t. But they don’t know how to, how do you write back to somebody that’s died and say thanks?
Sandra' I think they’re kind of frightened, that you said that the one’s that had spoke to you, that they would hurt them writing back and saying, “You know, I’m doing well, but you’ve lost someone.” That’s not the case; the case is we want to know they’re doing well, because it makes it,
Craig' It makes it a wee bit easier.
Sandra' Easier, and it makes it worthwhile.
Sandra was really chuffed to read what a difference her daughters donation had made to a...
Sandra' I felt a wee bit hollow soon, because I want to know how the people were getting on and it was a few month, it was maybe about five month after Rachel died we got a letter back from one of the recipients and it was just amazing.
He got a kidney and pancreas and it was just from this guy, well the letter explained how ill he was, or how well he was before he had kidney disease, and how ill and drastically ill he was. And then he’s got the kidney transplant, and he’s got, different kind of things were happening to, which quite a lot of it was down to Rachel. Like the way he looked and just what he intended to do with his life, you know, to get back into his sports and tour the world and all that kind of thing. And it was just amazing. Now that made up a lot of things. I was really chuffed with that letter.
Craig' So we all sat down and we read it. It was very, very emotional.
All of you together?
Craig' Yeah. Very, very emotional day, but it made up for a lot.
Things that remind Craig and Sandra of their daughter can make them smile and cry. Feelings of...
Sandra' She’s [daughter] still a part, very much a part of our family. She might not be here in the physical presence but we feel her round about us everywhere. And, as we say, we do talk about her, and that’s an important thing to do. I mean,
Craig' You’ll never ever forget them.
Craig' You never, it’s like, a lot as I said before, people’s attitude is forget the people that’s dead, and move on. Never forget them. You always can talk about them and they’ll always going to be there. And that’s part of the, I suppose it’s the healing process. They’re still about you. And no matter where or what I’ll be doing she’s still be there.
Sandra' It’s silly things; when you’re feeling down you’ll hear a certain song that Rachel used to sing, it will come on the radio and you get a wee smile on your face. Or, as Craig said, like the chid… seeing the kid with the chocolate cake and things like that, you could have,
Craig' And there’s things that still take you away, like on holiday. We were away and there was a child in the restaurant, in the morning having her breakfast. This young, oh she couldn’t have been any more than 2 or 3 year old, with the curly mops of hair. And she was playing up because she was, Mum and Dad were trying to get her to eat fruit and she wasn’t having any of it,
Sandra' She wanted the chocolate pancake.
Craig' Oh she was just like our Rachel. And I saw this girl and my heart broke. My heart just went right in my mouth, and it was just as if it was Rachel sitting. From the back she looked very like her, from the front she wasn’t so much the same. They still had the same kind of facial size and all of that.
But it broke my heart. I could feel my heart going right up even talking about it just now. I had to leave. Things like that, you see the odd thing that catches you and you’re not ready for it. And it does just hit you. But I’m still proud of her. And that’s the main thing.
Craig' We’re still proud of her. We’re proud of her.
Having a memory box helped Sandra, Craig and their son. It was difficult going into Rachels room...
Sandra' We got a box for [our son], we got a memory box and one for ourselves as well. And we allowed [our son] to go in, in his own time, to go in and out her [daughter’s] room and take parts of her belongings and he would go in and put it in the memory box.
And we gave him a jotter and it’s again to write down things that he wanted to write, memories he had, things he wanted to keep. Or he went, he wanted to go in her room and shut the door, we just left him. But the memory box was really, really helpful. He found that really helpful. He would go through and, what games they played together and there was probably bits missing,
Craig' He put riding gloves,
Craig' And things like that, because she loved horse riding. The riding gloves would smell of the horse, not that we owned a horse, but she was always at the stables. And like some of the clothes you’d have the, because you could smell the
Sandra' Aye, you could smell Rachel’s’ smell. The younger kids, they’d suggested that memory jars or thought jars, you know you can get the big jars and the kids can write down what they’re feeling and letters to them, their siblings, and things like that. That was something that was suggested. But [son’s name] felt he was a bit old for that. But for younger kids I think that’s a great idea, and to encourage them to talk about.
Craig' We did the same, we’ve got the box, the memory box as well, and it’s absolutely full to the, it’s huge isn’t it?
Sandra' I think we’re needing another one.
Craig' It’s huge and we’ve filled it with various bits and pieces that we wanted to keep. You can open it at any time, have a look at it, and that’s worthwhile, very, very much worthwhile, because it took us long enough even just to go into the room. It’s hard to even go in the room, look about the room and see things because it was still in the mess that she’d left it.
Sandra' Yeah. And her uniform was still on the bed,
Craig' And the uniform was like in, her uniform was like the, because it was the last day of school, last day of her primary school all the kids had signed “Best wishes Rachel from,” you know it was all on her school sweatshirt. And that was still lying out on her bed. And it makes it so heartbreaking to even see that. But things like that are kept away and they’ll be there forever now and it’s not going to be thrown away, and they’re all in there.
Sandra' We will always talk about her if we’re going places or doing things, and I mean it was, we don’t forget about her.
Craig and Sandra discovered how many friends Rachel had had and heard stories about her which...
Sandra' We had,
Craig' Oh yeah.
Sandra' amazing family support, and neighbours absolutely, we were blessed with the support that we had. And they, I mean they
Craig' I think we had over two hundred and odd cards, that I think the postman was,
Sandra' wasn’t it three hundred?
Craig' All I knew that table at the back, you couldn’t get another thing on it with flowers and cards. And the cards were all over. We just didn’t have enough room for it. People were so, so touched and just showing us kind….
Sandra' And it was the people that Rachel knew that we never knew, there was people coming to the door and we hadn’t a clue who they were. You know, that Rachel would stop on her way up from school and talk to this neighbour and that neighbour. And she knew that dog and this cat, and this child and that one, and she’d come up and tell you this lady in that street was having a baby.
The school were fantastic,
Craig' the school and,
Sandra' everyone’s, I mean the neighbours were all in and, as I say,
Craig' And a lot of people think that, they come in and I know from when my dad died, there were people come in and you’re thinking, “I just wish they’d go.” But people didn’t overstay their welcome, nobody did, did they? They were in, I think a lot of people, when it’s a child that’s gone, they’re absolutely stunned. They want to go in, say what they’ve got to, and then go, which is the right thing. It’s just to show a wee bit of support and, “We’re here for you if you want to talk, great.” And leave.
Sandra' And some come in with stories that we’d never heard,
Craig' The stories were good you know.
Sandra' Yeah, and different things about her. And the charity work that’s been done in her name as well since she’s died been absolutely amazing. From the school and the local community. From the shops,
Craig' And they’ve been really good.
Organ donation was one of the few positives Craig and Sandra had after their daughters death....
Craig' It’s one of the very few positive things that I can kind of cling onto if you like, from the whole terrible negative thing that’s happened. It’s one of these things that I kind of, well I do believe in organ donation but, it’s a very small positive thing that happened that day out of something that was immensely negative and tragic.
Sandra' And it’s the one thing that’s kept us going since then. We’ve got quite heavily involved in promoting organ donation. We do an education. We were involved in making an education pack for all secondary schools. We’re…
Craig' I think that all started with me doing that thing I wrote for the paper. They did a thing last year, and the Scottish Daily Record when it’s the donation week, or Transplant Week sorry. And they had stories about transplant recipients, and there’s all about life, kidney recipients, and there’s a story about somebody who’d got a new kidney and who was doing really well.
And they did this brilliant article about Rachel. And I think everybody then started to look up from NHSBT and the transplant co-ordinators [specialist nurses] and I think they started to realise, wait a minute this is a good story that we can use. And that’s how we ended up doing the education pack for the Scottish schools, because we got invited to tell the story.
To the schools as well? To, to…
Craig' Well I haven’t been invited out to the schools, but just with the education pack.
Sandra' It’s a DVD that’s going, it goes into every secondary school, there’s Rachel’s story, there’s another couple,
Craig' Oh there’s lots of different stories on,
Sandra' stories on it, but there’s some,
Craig' And the teaching packs to go with them, you know so that was a really big thing.