Features

Canon Peter Barham

Stay together and pray

STAY TOGETHER AND PRAY
May - June 2004

Sunday 23 May was a normal day. Me deacon, Julie preach, Harry sing, Hannah and Gareth in the Offertory Procession with other members of County Upper School. Julie said that the disciples, after the Ascension of Christ, “stayed together and prayed.” A good line, I thought, must remember that – little did I know how good it was.

Gareth wasn’t feeling too bright on Sunday, but perhaps that was just having to listen to mum’s sermon. He was worse on Monday; breathless, white and sick on Tuesday evening – to the doctors, then “take him to the hospital, get his breathing checked out.” The Xray showed his heart was enlarged, radiographer woken and called in, consultant called from her bed, a move into the Paediatric High Dependency, “we’re transferring you to London in the morning.”

More scans, more discussion, more doctors – then ambulance crew, doctor and nurse preparing to make the journey. No space in the ambulance for Julie and I – “we’ll follow down in the car. See you in London. Might stop for a pub lunch en route” (Peter is known for inappropriate humour!). My son raised an eyebrow over his oxygen mask – and they were gone.

First stop: Rothschild Ward in Guy’s – Paediatric Hearts – but Gareth needed Paediatric Intensive Care: Caleb Ward. I knew Caleb was an Old Testament person, but I forgot to ask the Dean who he was. Looking him up now, I find he was one of the spies who entered the promised land (Numbers 13). His name means “dog” – my bible dictionary suggests his father was a shepherd who knew the value of a good dog: “Caleb certainly appears as a good watchdog.” Julie’s sermon could have used the phrase “watch and pray”.

In the studio at BBC Radio Suffolk

Intensive Care nurses are incredible watchdogs – batteries of monitors, figures, lights, alarms. In the middle of all the technology, a patient, his family – all of us cared for, spoken to, told what was happening. Most of the nurses far younger than me – I felt old.

“Stay together and pray” – but we weren’t together. Hannah and Harry were 60 miles away. We learnt the importance of the Cathedral family – feeding them, finding them beds, ferrying them up and down to London, coping with them in school and out of it. No names – I’ll miss someone out – but thank you. I learnt the value of my mobile phone – long conversations with people, because I needed to talk. I needed to know that normality continued.

“Stay together and pray” – but prayer doesn’t come. I stood in the Chapel at Guy’s, and howled. “Why us? Why my son? Is this how you treat me?” Bishop Martin would tell me that was prayer – but it didn’t seem like it. I lit a candle in Southwark Cathedral, picked up the weekly service list, but never went to Evensong. Was it because I was scared at turning off my mobile phone? Was it because it was just too much like home?

The Hospital Chaplain came to us – “this is my body, broken for you” – that has a different resonance now. She let me cry on her shoulder, she understood when I said: “I’ve sat where you’re sitting. I’ve sat with parents whose child is far iller than mine is. I’ve been with parents as their child has died. I can do this. But I can’t do it when I’m the parent, not the chaplain.” There were no words, just a hug.

Slowly, Gareth improved. His lungs cleared, tubes could come out, he could sleep without an oxygen mask. Drugs were stabilised, a routine established. After eight days with Caleb, we moved back to Rothschild.

I had to learn, very quickly, how rare a community Bury is. In London staff come in all creeds, all colours – different dress, different accents. Men, women, black, white, straight, gay – the Consultant who tells me he plays in his church’s “worship band”, the Jewish doctor in his kippah (skull cap), the muslim doctor in her hijab (head scarf). An incredible, inclusive community. Yes, I do want to see a church like that.

Rothschild Ward is on the 11th floor of the Guy’s Tower – just beside London Bridge station. The view across the City is incredible. Southwark Cathedral and St Paul’s, both floodlit, spoke to me of the presence of God in all of this. I couldn’t put my thoughts into a coherent mass to pray, I was too tired to find the right words, I didn’t feel particularly close to Him, but nor did I feel He’d left us alone. The presence of the buildings, of watching the sun set and seeing it rise – somehow it spoke to me of everything being held by God. Even in his illness, I knew that Gareth was being held too.

We have incredible friends. One couple visited us several times a day, every day. They did the washing when needed, they fed us, they searched London for board games. Others called in after work, came down from Bury, kept in contact in so many ways. Unknown people became friends.

One day, early on, I foraged into Marks and Sparks for pyjamas – a rather bigger shop than Bury, I couldn’t find anything, I burst into tears on an assistant. I explained why, he helped me find what I needed, he cut the labels off for me (“difficult to do this when you’re not at home and can’t find the scissors”), he wished me and my son all the best.

A day trip to Great Ormond Street. It is possible Gareth will need a heart transplant. Again, skilled professionals examine him, talk to us, tell us the options. They treat him as an adult, they tell us what it all means.

Finally, back to West Suffolk. A few days for them to get to know him, for all of us to be confident we can cope with his medicines, with what he can and can’t do. I don’t know how much work I can do, how I’m going to balance work demands, family demands, and cope with the tiredness. I do know that I have friends and colleagues (colleagues who are friends!) and together we will get through it. “Stay together and pray” – sometimes the preacher gets it just right.

A FUTURE BATTLE THAT NEEDS TO BE FOUGHT
June - August 2004

We came home from West Suffolk Hospital on Tuesday 29 June - so five weeks had been spent in there and at Guy’s. Gareth has Dilated Cardiomyopathy, the heart muscle has been damaged by a virus, his heart is working about 30% what it ought to be. But hearts do get better. There are lots of people praying for him, perhaps, just perhaps, he will get better.

We have a month before Great Ormond Street’s Transplant Team want to see him. Perhaps this month will give him enough time to improve so the tests will show his heart is getting better and we can avoid transplant.

But they don’t. He felt he was getting better, I felt he was getting better, but the results don’t show that. “You need a transplant” says the Consultant. “I don’t want one” says Gareth. “OK, come back in a month, we’ll see how you are then”. But a week later, Bury’s Consultant is not happy - his bloods aren’t right, she wants him back in London.

We go for an Out-Patients’ appointment at GOSH on 10 August, and we know they’re going to tell Gareth he needs a transplant. He knows this too, and has come to terms with it. “You need to go on the Active List. Have an Echo scan, have lunch, come and see the Transplant sister, collect your pager and instructions, then you can go home, and we’ll be in touch when a potential heart is available” is roughly what they say.

But life is not that simple. The Echo scan is not good, his heart has deteriorated, he needs to stay in hospital for drugs and a blood transfusion. Within an hour he’s on the high dependency unit - and it is a fortnight before he is well enough to come home. 

And then there was his brother, Harry. He’d been off school for over a week, the GP said “virus”, and then sent him to Rainbow Ward when there was no improvement. They wondered if it was psychological (who can blame him?), then ran some tests, and decided on Viral Meningitis. Rest, take your time, he’ll be OK. But late on Saturday evening he got worse, and they decided a CT scan was a sensible thing to do.

Hannah and Gareth were being rude - “have they a lens big enough to find his brain?” - Julie and I had visions of Gareth at GOSH and Harry in the National Neurological Hospital next door. Our Consultant was called in - she said later she drove in, in dread at what she might have to tell us - but the scan showed nothing wrong. No bleeding, no tumour, no pressure points … and, it’s official, my youngest son does have a brain! It took him several weeks to get back to normal - certainly, a scare we could have done without.

Back to Gareth. So … what are the emotions? There’s fear - fear of the operation to come, fear that it might not be successful, fear that a new heart might not become available in time. There is tiredness - I can’t remember when I last had a good night’s sleep.

I want to work, to be fully involved in the life of the Cathedral. I am very grateful that so many have picked up the reins and done my work for me - I feel guilty at the amount of extra work I have had to lay onto other people.

Perhaps, worst of all, is the fact that we don’t know when all this will end. The Pager could go tonight, Gareth could have a new heart and it’ll all be over by Christmas. Who knows? I sit in my Stall for a peaceful Choral service, knowing that the Pager could bleep loudly at the quietest, most beautiful bit. It’s very difficult to concentrate on worship and prayer when you are willing it to bleep!

Gareth and Peter Barham

Prayer is difficult. We (and many, many others) prayed so hard for Gareth’s heart to get better - and those prayers have not been answered. Now we are praying for a new heart, but we know that someone has to die before that prayer can be answered. The Chaplain at GOSH was superb - she brought us communion, we prayed for healing, and we prayed for the person who will die before that healing is possible. No euphemisms, no tactful silence, just facing the situation as it is. We hope and pray that their family will, in their distress, take some comfort in the knowledge that their loved one’s decision to sign up for transplant has given another person life.

I have not lost my faith in God. I have said to so many people over the years that God does not send illness, that He does not punish people, that He does not cause suffering - and I have continued to believe that. There is still anger - why is all this happening to us? I wonder why, at times I shout at God, but generally I can cope.

But really, there is so much love, hope, joy and strength surrounding us, that most of the frustration and anger is conquered. The friends hang on in there with us, the medics are just as amazing whichever hospital you’re in, and however often you turn up!

THERE’S AN AMBULANCE OUTSIDE YOUR FRONT DOOR
November 2004 - January 2005

November dragged on, December was worse. We celebrated our wedding anniversary, and reached Gareth’s birthday (16 December). He received 140 birthday cards, we had a crowd round for the evening - “it was nice”, he said, “but there were conversations going on around me, and I couldn’t move from my chair to go and join in”. Christmas loomed, and we were dreading it.

On Monday 20 December he had his morning blood tests, then the Consultant phoned, she wanted him in West Suffolk overnight and to GOSH in the morning. We got him settled in the Rainbow Ward and I phoned Nadine, the Transplant co-ordinator in London, to tell her we were not at home. “Glad you phoned, I was about to phone you. We might have a suitable heart. I’ll phone in an hour”. 8.30 pm, all systems go. Into an ambulance, lights and sirens on, down the M11 into the hospital. Discussion, consent forms - “there’s a delay with getting the new heart here, you should go to Theatre about 3”. At 2.30 Nadine came into the room. The heart was not good enough, the op was off. The surgical team went home to bed.

I had had enough. I emailed the Dean and withdrew from the Staff Christmas Lunch. The Precentor had left me a message saying “do as much or as little as you want to do over Christmas”. I decided I was doing nothing over Christmas. I told God exactly what I thought of Him, and exactly what He could do with His Christmas.

At 1 o’clock on Wednesday morning, the phone rang. Nadine was on the line: “We have a heart. We know this one is OK. We need you here now. There is an ambulance waiting outside your front door. Get in it.”

Gareth, Julie and I were dressed and in that ambulance at 11 minutes past 1. (I wanted him to turn his sirens on as we drove through the Churchyard - wake up my colleagues - but he wouldn’t). We reached GOSH at 2.30. “You’re OK with the operation? Sign there. Put on the gown, and we’ll walk down to Theatre.” Anaesthetic on, Gareth asleep, Julie and I withdrew. It was 3 am.

Gareth on Christmas Day 2004

I dozed, Julie channel-hopped, Nadine popped in regularly to let us know the progress. Prof. Elliot, the surgeon, came up at 7 to tell us all had gone smoothly - a textbook op. Apparently it has been videoed, but I don’t think we’ll ask for a copy!

At 8.30 we went up to the Transplant suite to see Gareth. Wires, tubes, and a large bandage on his chest. By early afternoon he was opening his eyes and waving at us, by midnight the ventilator tube was out and he was talking.

He became more lively on Thursday and on Friday (Christmas Eve). I returned home to collect Hannah and Harry, and he was glad to see them. The four of us went to Midnight Mass in the hospital chapel - packed. Dorothy, one of the Chaplains, preached - linking the emotions of the people at the Nativity with the emotions of those of us in the hospital. I was reduced to tears by “In the bleak midwinter”:

What can I give him,
poor as I am,
If I were a shepherd,
I would bring a lamb,
If I were a wise man,
I would do my part,
Yet what I can, I give him,
Give my heart”.

I should imagine that carol will reduce me to tears whenever I sing it in the future.

On Christmas morning, Noel, the other Chaplain, brought us all communion in Gareth’s room. Noel, being chaplain of a Children’s Hospital, does not do many bedside communions - this was his first at a Christmas. It was very short, and very special.

Gareth unwrapped some of his presents, the rest of us had Christmas Dinner in the canteen.

Gareth got stronger, we started to relax. Then we arrived in his room about 8 on Monday morning to find it full of medics. He’d had a fit - and ½ hour later he had another. Sarah, the nurse in with him, was brilliant, and when she presses the panic button, everybody else runs.

I went down with him for a brain scan just to make sure there was nothing wrong there (I now know both my sons have brains; not so sure about the daughter…) - they decided it was probably a combination of his drugs. We got used to the hygiene regime - he even had “clean food” - over the days the tubes came out, the heart was beating happily by itself, the pacing wires were removed, it wasn’t long before he got out of bed, and he was eating for Britain.

A week after the operation he was moved down to Ladybird Ward - to his own cubicle. He walked - slowly and carefully with frequent rests - to the café, and to use the internet. He was the only one on the ward over three, and he was awake watching New Year fireworks on the telly with Julie and me (and three nurses!).

A fortnight after the operation he moved across to the Italian Wing, into the flat where Julie and I were staying. We were allowed to go anywhere within reason - so he insisted we drove through to Beckton in East London, where he knew there was a PC World. Three retail parks later, we found it - and my credit card suffered!

On Monday 10 January he was sent home. Less than three weeks after a heart transplant we’re driving north up the M11 (slightly slower than we drove down!). Incredible.

Gareth, fit and well, with Dad and Harry

Incredible - that is the only word to describe it. His original heart had failed, drugs could keep it going, but nothing could repair it. Transplant surgery has given him his life back. We have got our teenager back. If you haven’t signed up to be an organ donor, please phone 0845 60 60 400 or go to www.uktransplant.org.uk. Please encourage others to do so - there is a shortage of donors.

We know nothing about ‘our’ donor, but I am aware that, while 22 December will always be a day of celebration for us, 21 December will be a day of mourning for another family. We had a good Christmas - another family had an horrendous one. All I can do is to cry with, and pray for, them.

I don’t know why we were unfortunate enough to have such an awful 2004. There doesn’t seem to be a medical explanation, and I’m not sure I can find a theological reason. I know that God did not send it on us like some evil examiner - “let’s send them Dilated Cardiomyopathy and see how strong that Canon Pastor’s faith is” - that’s not my sort of God. If it doesn’t sound blasphemous, can I suggest that God knows what it’s like to watch His son suffer, and I don’t, I can’t, believe He causes suffering. We live in an imperfect, suffering, sinful world - my faith hasn’t helped me find answers (I’m not sure there are any), but it has helped me cope with the situation we have found ourselves in.

Gareth’s recovery has been very quick. I am aware that others who receive transplants do not heal as fast - and some do not heal at all. I am far more aware of the amount of suffering that so many families face. I hope we will be of some support - practical and prayerful - to others who wait for their transplant. I hope I can encourage others to sign to be donors (you have, haven’t you).

I am aware of the huge commitment and skill of the medics. We hear so much criticism of the NHS - but there is much to celebrate. Our GP, the on-call doctor who realised something was wrong, the specialists at Guy’s and GOSH - and our own West Suffolk Hospital. Our consultant, the other doctors, nurses, technicians, blood-takers, Chaplains - so many lovely people. Thank God for them, and pray for them.

My son has been on the receiving end of incredible resources, and the result has been incredible. How many other sons across this world will die today for want of any medical care? How do we face that challenge?