Death and children

This reblog for Dying Matters Awareness Week focuses on children and may provoke some tears.

Summer continued a pace and with it came a little lad on our PICU. He was 12 years old. He had a very big operation and lived somewhere in the Home Counties but had come because of my hospitals children’s surgery specialism. I had been chatting to his mum for a while about all sorts of things and I discovered that this young boy liked motorbikes. I started chatting to him about the various bikes I had ridden over the years.

Before I left I asked if there was anything that I could do. Mum said no but thanks for the chat, the young lad said there was something. I told him to spit it out, but he was a bit reluctant. In the end he said the one thing that he wanted was to be able to talk to his dad on the phone. I was slightly perplexed as to why this was a problem. Then he told me that his dad was in prison. I said I would do my best to see what I could arrange but no promises.

I phoned the prison and spoke to the chaplain there. He told me that he was aware of the situation but without external verification they had not been able to do anything about it. As I had phoned that was all the confirmation they needed. They then were able to get the boys dad and he had several chats on the phone despite the expense of patientline. The little lad was made up. He was so pleased to have spoken to his dad. He astounded the medical staff with the speed of his recovery. I’m sure some of that was down to him being content and feeling listened to and valued.

A few weeks later I got a card from this young man. In it he wrote:

“Thank you for your help so I was able to speak to my Dad at Elmley prison. Keep enjoying your bike. I hope to ride my mini moto very soon”

It’s so important, as far as I’m concerned, to be approachable so that people feel they can ask you anything and that you won’t sit in judgement over them.

Around this time whilst on call one night I had a very strange call out to HDU. A patient who had been on ICU was now with them and aware enough to realise that her baby had been delivered still born while she was unconscious. She had requested to see the baby. She wasn’t well enough to be taken over to the mortuary, so the baby had been brought to her. She now didn’t want to give the baby back and the staff weren’t sure what to do. It was a Sunday evening and the other staff that might be helpful, like mortuary workers, wouldn’t be around until the morning. In desperation they phoned me.

When I arrived the whole family were visiting and taking turns to hold the baby. After chatting with them I said the baby could stay till the end of visiting time then I’d have to take him back. Mum was very reluctant. She was still a bit dazed and also had learning disabilities. That meant I wasn’t able to give her the booklet about what to do after your baby had died, as she couldn’t read. It was an extremely hot day. The baby needed to be put back in the fridge. My problem was how to explain this with other small children around in a way that wasn’t going to upset them and that they could all understand.

I explained about the staff in the mortuary and what good care they’d take of the baby. I also explained that they would take some nice pictures if they wanted some. I went on to say how beautiful the baby was and explained that the only way to keep him looking so beautiful was to keep him cool. The 5 year old then asked me why. Oh dear! How was I going to answer that? I explained that we had blood going round us and we could drink nice drinks in this warm weather and that helped us keep cool but the baby couldn’t do that, so he would go all droopy like a flower that doesn’t have water, so the way to keep him looking so beautiful was to put him somewhere cool. The whole family accepted my explanation and allowed me to take the baby. I’m not sure it was the best explanation in the world but it was “good enough” for the time being and gave me the chance to take the baby away.

I went back to the ward after and spent some time with the mum alone. She was in hospital for weeks and that delayed the funeral. During this time she developed a good relationship with the mortuary staff and felt supported by the hospital in general.

This woman has been in and out of hospital since then and I have been able to support her with all sorts of things including filling in benefit forms for her and her 21 year old daughter who has become her carer. The role of a chaplain is extremely varied.

Shortly after this I met another woman who was struggling to come to terms with the loss of her baby but in very different circumstances. The baby was a very much wanted first child but the mum had taken the very difficult decision to terminate the pregnancy after a severe spina bifida was detected.

I met with mum before she delivered the baby. She asked me if I would bless her baby after she was delivered. I went back after the baby was delivered but mum was in a lot of pain and very tired after a very long and painful night. She asked if I would come back when she was feeling better. After talking to her we agreed to meet in the mortuary. She said for me not to knock but just go in when I arrived.

That day was one of those days. I was feeling tired and fed up. There were lots of demands on me and I was struggling to keep up with them. When I arrived at the mortuary the scene that greeted me was one that was so beautiful it stopped me in my tracks. The mum was cradling the baby and gently rocking her and reading her a story. The story was sleeping beauty and every time sleeping beauty was mentioned the mum changed the words and used the baby’s name instead. I stood behind her witnessing this scene with a lump in my throat.

Later when I was saying goodbye to that woman I thanked her for giving me such a beautiful moment in my day. A few years earlier I had been to a talk given by a Buddhist about beauty. He had said about how you could find beauty in everything, even the mundane like tying your shoelace. I had thought this was navel gazing in the extreme. I also wondered what beauty could be found in the death of a child? What that woman showed me that day was that there can be beauty amongst even the great sadness over the death of a child.

Around this time I also got to meet a family whose premature baby was in NICU. This family had already had two other premature babies. One had lived and one had died.

I gradually got to know the family better and was able to support them through the roller coaster ride of the ups and downs that their baby son was taking them on. This family had no faith or religious affinities but I was able to support them despite our differences.

At one point it looked like they had turned the corner. The baby had moved further down the unit to the area where there is less intensive care and things were looking up. Then the baby worsened and started to go downhill again.

One very hot evening just as I was preparing to go home I came around the corner and literally bumped into the parents. They were extremely upset. I brought them into the office. Over a cuppa they told me that there was no hope for their now 4 month old baby. It had been decided to withdraw treatment. They had come away from the unit to try and get themselves together and to wait for their daughter to arrive with her grandparents.

One of the things about dealing with a religious family is that it gives room and a framework for a ritual. When dealing with a non-religious family you have to create your own ritual. Rituals are quite important to mark endings. I encouraged these parents to think about what they wanted to do or say to honour their son and wish him well in his death. They decided to think about it and go for a walk while they were waiting. At the door the mum asked me if it was right to bring their 4 year old in and let her be part of what was going on. I said I thought it was really important and that she had been visiting him and was looking forward to having a baby brother at home. She needed to be allowed to say goodbye. At this point the mum started crying again. I hugged her and she just sobbed, then her knees buckled and she sank to the floor. I sank to the floor and continued to hold her. She just kept crying out “I can’t do this again, I just can’t do this again” When I pressed her as to what she couldn’t do again she said she just couldn’t hold another baby while he died, that she had done that once before and she couldn’t go through that again. The dad also said he couldn’t do it. I was still holding her and trying to reassure her and she said to me “ You give such good hugs. Will you cuddle my baby while he dies?”

Inwardly I gulped, but outwardly I reassured these parents that I would do anything that they wanted that they thought would be helpful.

I went to the unit when all the family had arrived. I encouraged all of them to say their own individual goodbyes as well as a joint family goodbye. I encouraged them to tell the baby what they were going to miss about what they had wanted to do with him. I then stepped behind the curtains and allowed mum and dad to spend some private time with the baby. During that time I hugged a few of the nurses who were finding it all very sad, as they had nursed this little boy for four months, as well as the doctors who were present. After a while Mum came out and she left and went to the relatives room. Dad then held the baby as they started to withdraw and then when he couldn’t take it anymore he handed the baby to me.

I looked at this tiny baby who was the most precious thing to his parents and I thought about the amazing trust that this couple had put in me. I sang to him and gentle rocked him while he slipped peacefully from this world. What an amazing privilege!

What did I learn from all that? I learned that chaplaincy is a complex role. When I came out from behind the screens to give the parents some private time I wasn’t able to take a breather because my attention was then on the staff of the unit who were finding the situation tough. I also learned the importance of being around and being part of popular culture. My conversations with parents inevitable start with chats about “Big Brother” or the football or Eastenders, or Harry Potter or the Da Vinci Code. These are not necessarily things, except the football, that would have been part of my life before. They have value though. As I build a relationship based on these chats people begin to see me as a person. The clerical collar stops being a barrier. From there the relationship can deepen if necessary and I’m not a stranger who comes in and says a few prayers and goes in their hour of need.

I also learned the importance of looking after myself and having good and regular supervision. It was an immense privilege to be asked to hold this little baby and an enormous position of trust, but it wasn’t without its cost to me. I needed to go home from the hospital and be very gentle with myself and begin the task of processing the experience.