Sue - Interview 18

Age at interview: 51

Brief Outline:

Sue's son, Martin, sadly died of a brain haemorrhage in 2003, aged 16. Working with different charities, she is now heavily involved in raising awareness of organ donation and supporting bereaved parents.

Background:

Sue is a costs lawyer. She is married and has an adult son. Ethnic background / nationality' White British

More about me...

Martin

 

Sue’s son, Martin, sadly died of a brain haemorrhage in 2003, aged 16. He had always been healthy. Unexpectedly, he collapsed at home around 2am. Sue was on her own. Her husband, Martin’s dad, had gone to America for work. She was unable to rouse Martin and immediately called for an ambulance.

At the hospital, Sue was told that Martin had 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. Martin was transferred from the local hospital to a city hospital. After surgery to try and stop the bleeding, he was admitted to intensive care where the bleed started again and he was taken back into theatre. They were told that Martin had had a congenital condition (a condition existing at and often before birth) called arteriovenous malfunction of the brain (AVM). This had caused the brain haemorrhage.

Sue, her parents, Martin’s brother and his girlfriend, were then told that, ‘The bleed was just too extensive, and there was nothing that could be done. We were asked immediately if we would ever consider organ donation... Martin had always wanted to nurse, and we believed and I still believe that it would have been his wish to have done something, if he could. My belief was, even at that point, that if I could save any other mother going through what I was going through, then that was something positive to come out of it. So we immediately agreed.’

Sue’s husband flew back from America as soon as possible. It was a traumatic time for all of them and difficult without him there.

Going through the organ donation paperwork was time consuming and Sue said it was the worst part of the process because it took so long. Martin’s heart was donated to a fifteen-year-old boy and his liver to a young man with a family. Sue and her husband met the liver recipient twice and hear from him regularly.

Sue is now very much involved in working with the Donor Family Network, a charity run by donor families that aims to support donor families and promote organ and tissue donation (http'//www.donorfamilynetwork.co.uk/).

 Sue and her husband attend the British Transplant Games annually and are also involved in a local committee that aims to promote organ donation. Soon after Martin’s death, Sue also got involved in an organisation for bereaved parents because she wanted to talk to other people who had been through something similar. She now hosts a support group for bereaved parents, a group which is part of The Compassionate Friends, a charity dedicated to supporting bereaved parents, siblings and grandparents (http'//www.tcf.org.uk/).
 

Sadly, doctors could not save Martin, who had had a brain haemorrhage. News spread quickly and...

Martin and I went to the local hospital where I was told he’d had a brain haemorrhage.It was only a small hospital and so we were transferred to a larger hospital about twenty five miles away, where he went straight to the operating theatre to try and have the bleed stopped.

My Mum and Dad came over and sat with me while we were waiting for news. And then my son and his girlfriend as well. We contacted my husband. The process was set in place for him to come home.

Martin went to theatre and came back to ICU. And then the bleed started again. So he went back to theatre again. And when he came back that time we were told that the bleed was just too extensive, and there was nothing that could be done.

Martin’s friends came to visit. Obviously bad news gets around very quickly. And by the next morning we were having teenage visitors coming in and out. Lots and lots of them actually that day, which was I think very brave of them to come and see him, to come and say goodbye. But he’d have been absolutely thrilled that they did all come like that.

So you were there and you had your Mum and Dad there as well, and later your husband came as well. It must have been very, very difficult without him there. And him being far, knowing what’s going on.

It was very difficult. It was difficult for me because obviously at times like that you just want your husband with you. It was difficult for my other son who was only 20 at the time, because he felt he had to fall into place as the man in all of this, and that he really was struggling. He’d lost his little brother.

And it was incredibly difficult for my husband because he didn’t know entirely what was happening, but he knew that Martin had collapsed and was in a coma. And by the time he actually travelled home from America, he’d realised that he was coming home to probably turn the machines off. Which of course was absolutely what was happening, but along the way we’d agreed to organ donation.
 

Martin wanted to be a nurse. Sue feels strongly that he would have wanted to donate. Later, she...

Martin went to theatre and came back to ICU. And then the bleed started again. So he went back to theatre again. And when he came back that time, we were told that the bleed was just too extensive and there was nothing that could be done.

We were asked immediately if we had ever considered organ donation. We had, as a family, considered organ donation and I know that my husband and myself were already on the organ donor register. Our children weren’t because they were children. We hadn’t actually considered that this was ever going to happen. It was something completely out of the blue.

However, Martin had always wanted to nurse, and we believed and I still believe that it would have been his wish to have done something, if he could. My belief was, even at that point, that if I could save any other mother going through what I was going through, then that was something positive to come out of it. So we immediately agreed.

Martin was then put on life support for the next 36 hours while my husband travelled home [from America], before the retrieval could take place. He was looked after absolutely fantastically by all the hospital staff. And we were looked after as well. We met the donor co-ordinator who explained all the system to us, and kept us informed right throughout the day when she was making enquiries as to potential recipients.

We signed all the paperwork, which was probably the worst point for me because it takes such a long time. You have to sign for each organ individually, and then you have to say whether, if the organ isn’t suitable for donation, whether you’ll agree for it to be taken anyway for research. Which we didn’t agree to at that time.

All I wanted to do was get back to sit with Martin. But these things can’t be hurried and we had to sit and fill it all in. It was about 8 o’clock on the Thursday evening by the time he actually went for the retrieval of the organs. All of his organs were used, apart from his pancreas, which apparently had deteriorated because he was on life support for a long time.

We know that his heart went to a fifteen year old boy, who had only hours to live. And we know that his liver went to a young man with a young family who also was at home waiting to die. At that point it didn’t actually give me any comfort. Because it was far too early.

We came home and I’ve never ever regretted the decision we made. It was the most tremendous tragedy for our family to lose a child who was only 16. But whatever decision we made that day was not going to change what happened to us that day. Martin was not going to make it, whether we said yes or no. But by saying yes we have changed the lives of a number of people and their families and friends.
 

Sue asked the funeral director if she could see Martin after he'd died. When they left him in ICU...

I remember asking the funeral director whether I would be able to see him. I felt I wanted to see him because the problem is, when your loved one is a donor, you actually don’t see them die as such. You don’t have this, where you watch their last breath and then you sit with them afterwards.

When we said goodbye to Martin on the ICU he was actually still pink and warm and just looked like he was asleep. And so that’s actually very hard for a lot of people to accept that death has happened. And so I was one of those that needed to accept that was real. 

And so we wanted to go and see him at the funeral parlour. But I was also very concerned at what he was going to look like. But the funeral director assured me that I would see nothing. Because, as I said, before he’s looked after just in the way any other surgery is, so the wounds are dressed exactly the same way, as small as possible. And obviously we took his clothes to the funeral parlour so we weren’t able to see anything horrible.
 

Sue had a meeting with the consultant six weeks after her son's death and two years later. She...

We had thousands of questions afterwards, but nothing actually at the time. But the hospital were absolutely brilliant and never failed to answer all our questions. We had a meeting fairly soon after we’d lost Martin, where it was explained to us that he’d had this congenital condition. And then we had a further meeting, probably two years later, because we had all the questions that were just niggling us, and they never failed to welcome us at any time.

My questions after we lost Martin were mainly in relation to the condition. He’d collapsed so suddenly but, as a mother, you beat yourself up. You find something to feel guilty about because he was so young and healthy. So I thought, “Should I have known? Should I have noticed something? Was there something I missed?” Things like that.

I then worried that he hadn’t been seen quick enough because we don’t live near a big hospital. I was assured afterwards that he would actually have been brain dead long, long before he ever reached hospital.

The consultant drew diagrams and gave me lots and lots of explanations that absolutely convinced me. But I obviously did have concerns at the time that we hadn’t done something right, or even they hadn’t done something right.

But I had no concerns over the care that Martin received. As a donor, he received equally good care as he would as a patient who they were trying to save, to live. Because those organs were just as important as if he was being treated to live. And as the co-ordinator [specialist nurse] once said to me, when she accompanied Martin to the operating theatre on the evening that the retrieval took place, he will be looked after just the same as if he was having any other operation because those organs are very, very precious to another person. So there’s no concern that, because Martin had actually died, that he wasn’t going to be treated in exactly the same way as anybody else.
 

Sue wanted to talk to people in a similar situation. The Donor Family Network and Compassionate...

For me it was quite important that I actually got to know other people in a similar situation. I asked the co-ordinator [specialist nurse] if there was any sort of organisation that dealt with donor families. And she put me in touch with the Donor Family Network, who supported us in the initial months and years even, until we became a trustee.

I also very quickly got involved in an organisation for bereaved parents. Which in the same way helped because I found local bereaved parents who I actually still am very, very friendly with.

Yeah. You decided to do this very, very quickly?

I decided very quickly that I needed to have contact with people who were in a similar situation to myself. Whilst at the same time I also acknowledged very quickly that one day I wanted to actually use this experience in some sort of positive way. I just didn’t know how.

And it wasn’t until we became trustees of the Donor Family Network that I realised that’s what I needed to do. I needed to use my experience of a few years to hopefully help by talking to people who are very recently bereaved. Who were still at that raw stage and thinking, “I don’t know what to do. Am I going mad?”

Through the counselling I joined a local bereaved parents support group. And over a period of time, we lost the use of the facility, where we were holding it. So we now actually host it at my house. But it’s actually part of another organisation called the Compassionate Friends.

The Compassionate Friends is an organisation that supports bereaved parents and siblings and grandparents. And we actually have support groups all over the country that are run for bereaved parents. There is also a help line which is manned 365 days a year, and I man one shift a week on that. Where we talk to bereaved parents who obviously are not always organ donors, but sometimes are. And we can pass details to them of support groups in their area.
 

Martin had always been fit and healthy. Out of the blue, he collapsed at two in the morning and...

It was August 2003 and my son, Martin, was 16 years old. He’d just left school and was waiting to enrol in the local college. And he was perfectly healthy; he’d always been a perfectly healthy boy. No major illnesses, no time off school. He was a boy with a capital B.

It was a Wednesday evening and he went to bed as normal, seemingly perfectly alright, and around about 2 o’clock in the morning I heard an almighty thump coming from his bedroom. And he slept in bunk beds at the time and I thought he’d fallen out of bed. And then I heard more bumpings and bangings and I sat up in bed and said, “Are you alright Martin?” And with that he appeared in our bedroom doorway and literally collapsed in front of me.                                   

I couldn’t rouse him, and realised that it was clearly something serious. So I rang for an ambulance. The ambulance took us to our local hospital. At this point there was only myself and Martin in the house. My oldest son was staying at his girlfriend’s and my husband was away on business.  

             
Martin was always fit and healthy, and this came completely out of the blue?

It did, it came absolutely completely out of the blue. He’d never had any ailments beforehand; you know he’d just been a really healthy boy. We did find out afterwards that it was actually a congenital condition. He suffered from a condition called an arteriovenous malformation of the brain. Which is a congenital condition, but not something we knew anything at all about.

There were no side effects, no symptoms, no warning of this. We were told that it would have been like a twig snapping, that the bleed would have been so catastrophic that it would literally have just been a very sudden snap. One minute he was fine, the next minute he was in a deep coma.
 

Sue met her son's liver recipient twice, the second time on TV. She was terrified beforehand and...

We have actually met the recipients of Martin’s liver twice. The first time was incredibly emotional for all of us, and then the second time we met on TV and, again, that has helped me because instead of some anonymous person, he’s a real person and Martin is to him.

He told me he was absolutely shocked to find out that his life saving operation was due to the death of a young child. But, as I said to him and his wife at the time, whatever decision we’d made would not have changed what happened, and therefore I’m really glad that he’s doing so well. And we often hear from him. We always hear from him near the anniversary of Martin’s death, which is really nice.

Before we met him I was terrified. It was such a good idea at the time. We met through one of the newspapers who wanted to run an article on covering a donor family, then a co-ordinator, then the surgeon and the recipient. And we were asked to become involved in this. And it was going to be just an interview each. And then when we were interviewed we were asked would we actually consider meeting in front of a camera.

Was this you and your husband?

Yes, this was me and my husband. And so we agreed, no I think I agreed. And it was all organised and I know the day before I was thinking, “Why did I agree to this? What have I done?” We met in front of a video camera but away from each other to start with, and had an interview and then we actually met together at their house. We went to their house and spent the whole day with them, which was fantastic.


Yeah. And is there any message you would give to anyone who is thinking of meeting up, or any tips? Any way of preparing for that or there is absolutely no way?

I don’t think you can prepare for meeting the recipient of your loved one’s organ because it is just such an emotional time. I think you’ve got to really want to do it. And you’ve got to know that you’re strong enough at that time to do it, not do it too soon, both sides have got to want to do it.
 

Donating an organ is doing something positive after your own death. Sue encourages people to talk...

To anybody who hasn’t yet registered on the organ donor register, I would just say to them to just think about it. I can appreciate that it’s not for everybody but people aren’t always aware that they’re far more likely to need to receive an organ than they ever are to be in the position to donate, because there are only certain types of death that can lead to a donation.

Whilst it’s not an easy thought because people don’t like thinking about death, it is important to consider whether you want to do something positive after your own death, or after the death of a member of your family.

I would say the worst thing that can happen is a bit like it did for us, we were sat in ICU with a child who had just died, or was dying. And suddenly put on the spot. Because he wasn’t on the register. We were but he wasn’t and therefore we were put on the spot that night, and asked whether we would consider it. And yes we knew the answer straightaway, but everybody doesn’t because they haven’t considered it beforehand.

And when you’re in that position of a tragedy, it’s not the best time to think about difficult decisions. And it’s very easy then to say, “Oh no, I can’t go there. I can’t think about that. It’s too painful. Too much to think about.” And possibly regret it afterwards. Whereas if you have the opportunity to talk about it with your family around the tea table, and just actually openly discuss it, and then you know each other’s wishes. And if you’re ever put in that position, then you know the answer and you don’t have to be put on the spot like we were