Day 1 - Roderik's Birthday
"You'll be home soon"
On the 9th March 2004, the doctor was asking me if I wanted a priest.
I couldn't grasp why I might want a priest.
After 24 hours intense labour and no sleep, I didn't realise it was the hospital's way of saying that someone wasn't expected to live.
"No thank you." I said.
"I wouldn't mind a Buddhist", I added. Still no idea why they suddenly thought I might be in need of spiritual guidance.
Besides, I had been told just before my breakfast of weetabix, that the baby I had just given birth to - after a long struggle - was a little bit ill and might need to be in the incubator for a couple of weeks.
They had reassured me that the panic as soon as he was born, when he was instantly whisked away across the room, when the doctors and nurses were running around frantically, was nothing to worry about.
And I didn't worry. After all, he was born at term - he wasn't premature. If anything, he was rather large (and I'm quite small) - and had needed a herculean effort on my part to push him out.
By now, I'd lost all sense of time. I actually thought he'd been born a day ago; in reality it was only five hours earlier.
This was the first time I had seen him since he was whisked away. I was wheeled up into the Neo-natal Unit to see him. I smiled at the doctor. He looked serious.
"He's OK is he?" I asked. His face fell.
"Oh - 50-50 is it?" I asked.
That was when he asked if I wanted a priest.
The doctor left me alone with Roderik for a while.
He was beautiful, and so peaceful. But I was alarmed by the cobweb of tubes connected up to him.
To my surprise, I was allowed to put my hand in through a hole in the incubator and touch his forehead. I was very nervous of knocking a tube. But was delighted to touch his warm, silken skin.
"You'll be home soon", I reassured him - though he was not responding to my touch, or interacting in any way.
I tried to put some of my breast-milk on his lips, with my finger. But still no response.
The doctor had suggested we talk with him in a private room. That was when it dawned on me what he was trying to say. When he told me there had been severe oxygen deprivation to Roderik's brain, I suddenly knew what he meant. He said the brain trace was totally flat and none of his organs were functioning - except for the help of the tubes.
From then on, of course, everything changed.
Roderik was artificially trapped in his body. But, while he was still there, each moment was very special.
I was relieved that some Buddhists were coming.
I was amazed how kind and generous and loving everyone was. In hindsight, I suppose that is normal in these circumstances. But to me it seemed that Roderik had brought light and love to the hospital and brought people together.
And especially when the Buddhists arrived, the atmosphere became distinctly charged with love.
The Neo-Natal Unit was transformed
It happened that, across the road from the hospital, a group of Buddhists of the Tibetan tradition met regularly. They had offered their services to the hospital if anyone was in the position of nursing a dying person and wanted spiritual support from Buddhists. This was the first time they'd been called upon by the hospital; the first time someone had accepted their offer.
I had, two years ealier, 'taken refuge' in the Tibetan Buddhist tradition myself.
When the waters had broken and I went into labour with Roderik, at home early on the 8th March (International Women's Day), I had filled the room with Tibetan music for several hours - the midwives had commented on the lovely atmosphere.
After about 20 hours, it became evident that the baby was stuck and, I was transferred to hospital.
Now I asked my friend to bring my Tibetan mala beads into the hospital and I placed the mala in Roderik's incubator.
I have to say that when the Buddhists arrived and carried out a puja (ceremony and chanting) around the incubator, it felt extremely powerful. It felt like the whole neonatal unit was transformed. The doctors and nurses felt it too. I remember them saying that I was very lucky to have such support from my religion. I agreed.
From then on, I spent as much time as I could sitting by the incubator. It felt like a shrine, and very healing. I could sit there for hours absorbing the love and watching Roderik, lying so still and so quiet.
Day 2 - Roderik's Life-Day
Each moment was eternal
10th March 2004 was a unique and special day in my life. It was the only whole day I spent with Roderik.
Each moment lasted an eternity. Time had no meaning. So, although in reality I had had less than a day to accept that he would not live, I felt I'd had a long time to come to terms with it. And I felt an acceptance of the situation.
I also felt that now at least there was something positive that I could do. The hospital staff were as supportive as they possibly could be. It was evident to everyone that Roderik was trapped in his body, was barely alive, and was only breathing because of the artificial life support. That all we could really do for Roderik now was to choose the time of his death and make the occasion as beautiful as possible.
The staff made it clear that they were anxious to do everything according to our wishes and to respect Buddhist principles.
I asked my friend to bring in my copy of the book, "The Tibetan Book of Living and Dying" by Sogyal Rinpoche. My brother had given it to me years before, and it had changed my life. I already considered it to be my authority on life, as well as death.
I wanted to check, first of all, whether withdrawing Roderik's life support was in contradiction to the card I had taped to the outside of his incubator - 'I vow to respect all life"; the card I had been given when I took refuge as a Buddhist two years earlier.
"Being in an intensive care unit will make a peaceful death very difficult", I read.
"As the person is dying, there is no privacy: they are hooked up to monitors.... To use life support mechanisms when a person has no chance of recovery is pointless. It is far better to let them die naturally in a peaceful atmosphere and perform positive actions on their behalf. When the life support machinery is in place there is no hope, it is not a crime to stop it, since there is no way in which the person can survive, and you are only holding onto their life artificially."
That was clear to me, and tied in with my own strong intuition as mother.
The Buddhists returned to the hospital today, and conducted another puja around the incubator.
This time, in the middle of the ceremony, Roderik spontaneously jerked his arms and legs. The doctor saw and was amazed. We requested another brain scan, just in case. But the brain trace was still totally flat; and he never moved again.
I asked the Buddhists if they knew of a Lama who might pray for Roderik at the time of death. They got in touch with Lama Jampa Thaye in Manchester who agreed to do so, and the time of was set for 8 pm the following evening.
We were to be able to have a room next to the Neo-natal Unit, for the purpose, and would be allowed to decorate it and set up a shrine.
It was of course a strange situation. To know I had just another 24 hours with my baby. But by now the atmosphere was - to me - so spiritually charged that I found it impossible to feel afraid or mournful. And I wanted to enjoy every precious moment with Roderik.
In fact, rather than feeling sad when I went to see him, I felt an overwhelming feeling of love and light.
I'd sit with my baby on my lap, almost like any other mother
The nurses periodically removed Roderik from the incubator - still with tubes attached - so I could hold him on my lap. So I'd sit there next to the incubator, with baby in lap, almost like any other mother - except that I had a known time-span with him.
He didn't physically respond or acknowledge me. But those moments were timeless and magical - and I felt as close and connected to my baby as any mother.
The hospital strongly recommended that Roderik's brother and sister should come and see him while he was still with us. At first, I was apprehensive. But in hindsight they did the right thing - I'm very glad that they emphasised the importance of it. So it was also arranged that brother and sister should come in the next day.
I went to sleep surprisingly contented that night, feeling that I'd had a happy day with my son and done all that I could for him for the time being.
The still of the night
A few hours later, the nurse woke me. It was thought that may be Roderik wouldn't last the night after all.
The hospital staff insisted on phoning the Buddhists yet again, just in case. So a lovely woman came to see me in the middle of the night and sat with me and chanted, yet again, around the incubator. She also shared with me the fact that her husband was also dying, and she sometimes had to go off like this in the middle of the night to the hospital to see him. I was incredibly grateful to be sitting there with her, and for the time she gave to me and Roderik.
I spent most of the night sitting up awake next to the incubator, feeling at peace.
Roderik made it through the night.
Day 3 - Roderik's Departure
11th March 2004 was potentially to be the worst day of my life. I am forever grateful to the Buddhists who came in many times for spiritual support - and to the hospital, who helped to ensure that support was there.
I don't really know how to describe it. The closest I can get I think is to describe it as a near-death experience for me - because I feel like I went though it all with Roderik.
Telling his brother and sister
The worst bit, certainly, was Roderik's brother and sister coming in to the hospital and finding that I had to tell them myself that their baby brother was going to die.
I thought someone else would have told them - and perhaps the hospital assumed likewise. But I guess everyone had found it too hard to do so.
The only criticism I have of the hospital in the whole process was that I was unsupported in telling the children - and that I had no-where quiet to go to do so. I remember taking them into the corridor, with people walking by, and trying to find the words to tell them - in preparation for them seeing Roderik.
Roderik's elder brother - who had just had his 9th birthday, came into the neonatal unit to look but I couldn't persuade him to stay. He went off to join his friend in the waiting room, watching videos. It was too much for him to take in and I guess he needed to cope in his own way, in the company of his friend.
His sister stayed with me in the neo-natal unit. She had brought clothes in for Roderik. The nurses got him out of the incubator and sat him on her lap and helped her to dress him. She then sat there with him on her lap for an hour or more, first of all crying, and then talking with me about the fact that he was trapped in his body and he needed to be set free.
I was trying to explain to a five-year-old that, even if the hospital were able to keep her little brother alive, he would never be able to do more than breathe. Never leave the incubator, never be able to move and never be able to talk to us.
Then to also explain that Roderik was more than what we could see; more than just his body, and that he would always be with us but would be free and not be suffering. She agreed that it was no life for him, how he was now. And that switching off his life support was the right decision.
The hospital staff heard much of the conversation and said afterwards how impressed they were with her level of awareness, understanding and converstion. In all honesty, I don't know how else I could have explained it to her.
For years afterwards, I never actually used the word 'die' when talking with the children. Instead, we used the phrase 'leaving the body'.
I took the children to see the room where Roderik was to leave his body, and to help to set up the shrine. We decorated the room with ornaments they had brought in, and the hospital even allowed us to burn incense, which I'm sure was quite against regulations.
Then it was time for the children to say goodbye.
'Leaving the body'
An hour or so later, just before 8 pm, Roderik was brought into his special room, with the doctor in charge of the neo-natal unit, and two nurses.
It was a beautiful atmosphere in there. And I was helped by the knowledge that a Buddhist Lama would be praying for Roderik on the hour.
Roderik was now free of all his tubes, except the oxygen tube to his mouth. Sitting with him in front of the shrine, we removed that one tube and, twenty minutes later, his heart stopped. The doctor was crying. He said simply that he was about to go home to his four small children. I handed out bach flower rescue remedy to everyone.
According to the Buddhist tradition, when a patient is declared clinically dead, the subtle consciousness may still remain in the body for about three days. The hospital agreed to wait three days before sending the body for post mortem, and not to touch or move it - except for out of the room.
On the third night, back at home, I woke in the middle of the night to see a tortoiseshell butterfly asleep on the wall above the bed I had prepared for Roderik, next to me. It was early in the year for a butterfly to appear. In many cultures throughout the world, a butterfly is believed to represent the soul of a deceased child. In fact, the ancient Greeks used the same word for 'butterfly' as for 'soul' - psyche.
Psyche, the personification and Goddess of the soul, was represented as a butterfly.
My greatest teacher
In Tibetan Buddhism, it is customary to hold prayers and services for 49 days - as the soul is said to be in an intermediary state for this time. Seven weeks after his departure, we held a farewell service for Roderik in the local village hall, and the Buddhists once more came and held a ceremony.
We asked that donations be sent to the ROKPA Trust, instead of people bringing flowers. Rokpa means 'help' in Tibetan. The charity helps communities in need in Tibetan areas of China, Nepal, Zimbabwe, South Africa, Europe and the UK, irrespective of their religion, nationality or cultural background. ROKPA consciously avoids political activity and, instead, aims to forge a dialogue with the local authorities with a view to establishing sustainable long-term support measures.
I felt that I had done what I could for Roderik. I feel blessed to have known him and, even now, when I think of him and especially at this time of year, I feel a shower of blssings and positive energy which is very tangible to me.
Suffering behind closed doors
I have not recounted this because I think I am exceptional in experiencing the death of a child, nor do I think that Buddhism is the only way to cope. Every experience is uniquely individual.
I learnt recently that Buddha is also said to have died on the 11th March - so it seems appropriate that it is Buddhism which helped me. I don't claim that Roderik was an enlightened being, but he has certainly been my greatest teacher.
There is a Buddhist story about a mother whose baby died and she went to see the Buddha. The story goes that he told her to bring a mustard seed from a home where there had never been a death. She searched but could not find such a home.
I would even go further and say that, in fact, it is quite hard to find a home that has not - in one way or another, been touched by the death of a child - including friends of the family. That was the first thing I realised after Roderik's death.
Even in the 'developed' western world, infant death is still very common. We tend not to realise, because we don't talk about it.
I was dreading the phonecalls to tell people. I certainly didn't expect the response.
The first person we phoned told us about her baby who had died twenty years earlier. She had breast-fed her baby daughter for six months, knowing that she was dying - and not knowing, each time she cried, whether she was in pain or just hungry. The second person had a son who had died age two. These were people we knew well, but we hadn't known their heartbreaking stories.
The third person had a friend who had helped to set up SANDS, the Stillbirth and Neonatal Death Charity as a result of her own experience. She lent me their book. I quickly realised that many others had experiences far worse than mine - in terms of experiences with still-birth, hospital staff being thoughtless, not allowing parents to see their baby's body, and so on. I began to feel that, in fact, I had been lucky.
Over the years, I have never ceased to be surprised just how many people have had similar experiences and, also, that child-death is rarely talked about.
So I have written this little series of blogs because I believe it is a subject which needs to be talked about more. It may also be helpful to hospitals etc to be aware what I found to be helpful and where there was room for improvement, though of course every situation is different; everyone is different and will have different needs.
I have also - for my own sake - found it helpful to write a fuller account of Roderik's short life. As bereaved parents will know, anything which seems to bring meaning to a child's life can be helpful in the bereavement process.
Roderik has helped me to realise that there is often so much suffering behind closed doors, which we may never know about, even in the 'western world'. In many other countries, child-death is almost a part of every-day life. And I can't begin to imagine the immense amount of support and healing needed by families who are torn apart in conflict situations, and live in permanent fear.
There's one quote (attributed to Plato) which may be summarises what I have learnt from Roderik - 'Be kind, for everyone you meet is fighting a hard battle'.
Poem: 'Missing You' - written recently by Roderik's sister