Tuesday 28 August 2007

My son reeled into the room and I knew something was horribly wrong...

Today I have a very sad article in the Daily Mail about a boy who died, suddenly, leaving his family devastated. They chose to donate his organs - helping many other people.
Here is the link to the article, http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=478232&in_page_id=1774&in_a_source=

Or here is it in full...

My son reeled into the room and I knew something was horribly wrong...

On this day four years ago, 16-year-old Martin Burton died suddenly from a brain haemorrhage. His parents, Nigel, 48, and Sue, 47, donated his organs for transplantation, saving one boy's life and helping many others. Here, Sue tells SARAH EBNER the tragic story of what happened to her son...

"Martin was hooked up to tubes and monitoring equipment, but he seemed peaceful. I couldn't believe we had lost him, even though I knew he was brain dead.

He was pink and warm, and looked as if he were asleep. I sat and held his hand for hours and hours.

We had decided to donate Martin's organs and were asked if we wanted to take him into theatre. I declined. I'd been there for 36 hours and at some point we had to make a break. But the hardest moment for me was walking out of that hospital. I knew I was leaving my son behind.

Martin's death was the most profound loss, something you cannot imagine until it happens. Losing a child is the wrong order of things. All your hopes, your plans, your dreams of their future and your future are shattered.

You have to get used to a new life with a big part missing for ever. And that's the hard part to accept: that it is for ever.

Immediately after Martin died, I was too upset to think about the boy who received Martin's heart. Now I do think about him, particularly on days like today, the anniversary of Martin's death. It's as important a day for his family as ours, and I don't doubt that his parents give thanks every day for our decision.

It was the school holidays. Martin was his usual boisterous self. He'd gone to bed fine, but in the early hours of August 27, I heard a thud. It sounded like he had fallen out of bed.

Martin was often noisy, so I didn't thud. It sounded like he had fallen out Martin was often noisy, so I didn't worry. But the noise continued, like a banging. I realise now he was probably staggering and hitting the walls and furniture.

I sat up in bed and shouted: 'Martin, what are you doing?' The banging continued, so I called out: 'Are you all right?' He appeared in my bedroom doorway. 'Are you all right?' I repeated.

He looked at me with a glazed, confused expression. I realise now his brain was shutting down; he probably couldn't see or hear me, and he certainly couldn't speak. I've re-lived the expression on his face millions of times.

Martin staggered towards the bed and collapsed on it. I thought it was concussion, so I shook him.

He then rolled over and fell on the floor. I didn't realise it at the time, but he was in a deep coma.

I now feel naïve that I didn't realise how serious it was, but he seemed fine when he went to bed.

When I couldn't wake Martin up, I rang for an ambulance and it took us straight to Grantham Hospital. Nigel, my husband, was working in the RAF in Las Vegas when this happened, while my elder son Chris was staying with his girlfriend. When we got to the hospital, Martin was whisked away and I was left in reception.

I was in a daze - it seemed unreal. After a while, a nurse told me Martin was really ill and suggested I phone somebody. I rang my parents.

When they arrived, we were taken to see Martin, who was on a life support machine. We were told he'd had a brain haemorrhage (bleeding in the brain) and were advised to tell Nigel to come home.

Martin was transferred to the Queen's Medical Centre in Nottingham at 5am. Three hours later, the consultant said the extent of the bleeding was so great that there was nothing they could do. He then asked if I would consider donating Martin's organs.

I immediately said yes. Although we had never discussed it, I was sure Nigel would agree. I think Martin would have wanted it, too.

He was young and healthy. He'd had no illness, no medication and no injuries. The only part of him that was damaged was his brain. I thought that if I could save one mother from going through the nightmare of losing someone, it was worth it.

And I did save a family from that hell because Martin's heart went to a 15-year-old boy who'd had only hours to live. Hopefully he will now live a long, healthy life.

But while I do think about that boy, there's no comfort for me in the donation. Maybe there is consolation in knowing Martin did not die in vain. But at the moment I still see it as them having what I want: they've got a healthy son.

Martin was kept alive on life support until Nigel got home. It took him three flights and he arrived at 9.30am the next day.

I sat by Martin's bedside for all that time. Apart from a dressing over the pressure gauge which had been inserted into his brain, he had no injuries to his face or body, so didn't look any different. It was as if he was still alive.

When Nigel and I saw each other, we were in floods of tears.

You have to sign an agreement for each individual organ. You can say yes to some and no to others, and you also decide, if the organs aren't fit to be used, whether you want them to be left in the body or taken for research.

We said yes to everything, but no to the research. I've never seen the donation as a violation of Martin's body, but I think I felt giving his organs for research would be.

Because he was a multiple organ donor, we had to wait until all the doctors were ready, which wasn't until 8pm that night. I didn't want to see Martin go, so the transplant co-ordinator accompanied him to theatre for me. Nigel and I then left the hospital. YOU choose if you want to know what happens to the organs and we decided we wanted information.

Martin's lungs, heart, liver, both kidneys and both corneas were donated. All the organs were used that night, or in the early hours of the following morning, apart from the corneas. They were frozen and I don't know if they've been used.

Except for his heart, Martin's other organs went to older people. His liver to a middle-aged man; his lungs to an elderly gentleman; one kidney to another elderly man; the other to an elderly woman.

I would have liked more of Martin's organs to have gone to children because I feel enormous empathy with the mother My Lifesaver of the boy who has Martin's heart.

But when we agreed to donate them we knew we had no say in what happened. They must go to the person who has the best chance of receiving them successfully and that's much more important than age.

Still, we would love to meet any of the recipients. It would be nice if the transplant teams around the country could encourage contact between the families by letter for a longer period of time - perhaps an exchange of photos to make it less anonymous for both families.

Currently, they can only send an anonymous thank-you letter, with transplant co-ordinators acting as go-betweens. But I do realise it must be hard for the recipient families to know what to say.

At the time, we didn't know why Martin had collapsed. He'd always seemed healthy. We now know that he'd had a brain haemorrhage because of an arteriovenous malformation of the brain, or AVM, and that it could have happened at any time. AVMs occur when blood vessels develop in a malformed way.

Blood is normally pumped by the heart to the brain via arteries. When it's in the brain it's nourished by the capillaries before going back through the veins.

When you have an AVM, you don't have these capillaries. This means there's pressure on the blood vessels, which can rupture.

The consultant who looked after Martin described it to me as being like a twig - fine one minute, then snapping. The bleed would have been so catastrophic that Martin's brain would have started to shut down in a few minutes.

The brain haemorrhage caused Martin's death, but that was caused by the AVM, something he was born with. He could have collapsed at school or out with his friends, but he happened to be in bed. I'm grateful for that because I hope in his last thoughts, he knew I was there.

It's now four years since Martin died, but life never goes back to normal. The pain never goes away, but you learn to cope with it.

At first, I couldn't remember Martin's life; I could only remember the death.

It was a long time, maybe a year, before I could think back to the good times. But memories are there for ever. Now I remember Martin with a lot of smiles. He was that sort of a person."

For more details about the Donor Family Network - a charity run by donor families for other donor families - see www.donorfamilynetwork.co.uk.

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