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Why high quality bereavement care standards are so important

Sharon, who is Bereavement Support Group co-ordinator for the Twins Trust (formerly Tamba) and member of the NBCP Training Sub Group, writes about her twin boys who would have turned 21 last year, and how high standards in bereavement care and  support make such a different to bereaved families: 

I am mum to 4 children; my twins Charlie and Joshua who would be 21, Jessica who is 20 and Samuel, 19. I am very proud of all my children and I am especially proud to be a mum of twins. I can remember every detail about the pregnancy and especially from the 20 week scan when I found out they were boys. At 26 weeks I didn’t feel well at all and we had to travel all the way to Stoke on Trent as our nearest hospital in Oxford didn’t have space for two babies.

When they were born I was rushed down to the labour ward as they were not happy with Joshua’s heartbeat. It was all a bit of a blur. We had not been to a single parent class and suddenly I was in labour. Charlie, twin 1 was born first at 10:31 and let out a tiny cry and Joshua was born at 10:44 but made no sound at all. They worked on Joshua for quite a while before taking them to the Neonatal ward. I was sorted out and then taken back to the ward. It was a few hours before we were taken round to see them. We arrived to see them in two incubators next to each other.  They were tiny but perfect, wearing tiny nappies and tiny hats. They were identical although I could easily tell them apart.  They had so many problems but they fought so hard to survive.

The staff were amazing and encouraged us to be involved in their care. After a couple of days we were given a room on the unit so we were always by their incubators. Both sets of grandparents were there every day too and we also had some of our friends and other family visit them too.

Charlie died aged 7 days, in my arms. We had the most amazing midwife called Sharon who encouraged us to make such lovely memories with Charlie. We washed him and dressed him. We were given hand and footprints and a lock of his hair. It was all quite unreal though and I needed a lot of guidance to know what to do. I remember wondering if it was normal. He looked peaceful for the first time which was of some comfort.

Joshua had a traumatic but successful operation at Birmingham Children’s hospital but was transferred straight back to Stoke the same day.  He lived for a few more days… I held his hand before asking to hold him in my arms to die just like Charlie. He did not look peaceful though, he was so bruised from his extra week of life.  He died aged 13 days after such a fight to stay alive. We went through the motions of dressing, bathing, hand and footprints again. It was the oddest feeling- a feeling of deja vu. Joshua spent the night with us in our room before we were able to reunite them, our first time holding both of them and where we took most of our beautiful and favourite photos. ‘Together Forever.’

Together Forever

We had to register their births and deaths before coming home which was one of the hardest things I have ever done. Then we had the problem of getting them home. They were going to our local Funeral Directors but I couldn’t bear the thought of leaving them. They could get them home for us but I wanted to be with them. Then it was suggested that we could bring them home ourselves in our car. We needed a letter to take with us and then we basically wrapped them in their blankets, carried them out of the hospital and Dominic drove us all back to Banbury with them on my lap. I couldn’t actually believe what I was doing really, but was so glad that we could take them ourselves. It was lovely but bizarre. I could have happily kept them forever!

I am not quite sure how we got through the funeral but we did.  We were surrounded by amazing friends and family which definitely helped. There is so much more that I could share about the time that the twins were alive, but I also want to share some things from after they died.

I think the first few months were bearable as I felt like I had so much support from family and friends, it was probably around 4 months that I began to find it really difficult.  That was when I contacted Tamba, now Twins Trust.  I was given a befriender to talk to which helped so much.  I also joined my local Sands group where I met a mum who had also just lost her twins.  That was such a help to me. I personally found the first year the hardest, the first Mother’s day, Christmas, birthdays etc. etc. right around to the first anniversary. Jess was born a week before their first birthday which was definitely a great help to me.

I began to volunteer for Tamba/ Twins Trust as a befriender after Jess was born, talking to people who had lost both of their twins just as my befriender had helped me. I volunteered as a befriender for about 14 years until I was asked to coordinate the bereavement group 6 years ago.  I have spoken to so many lovely people and made lots of great friends along the way. I continue to do some befriending and get to talk to many bereaved parents who come to us for support.  I am so privileged to hear about all of their lovely babies.

Twins, Triplets and more are special, I felt so admired and important when I found out I was having twins, not only by friends and family but also by the health professionals. I am fascinated by twins and was so excited to be having that experience. Would they be similar in character or completely different like Jess and Sam are?  I will never know now what it is like, since mine died I can only imagine…  But I am a mum of twin boys and feel very proud to be so.

Bereavement care is so important for newly bereaved families and I have to say the care we received, with the exception of a few moments of insensitivity, was excellent and helped us so much. The words in bold font used in our story above identify those areas that are covered in the National Bereavement Care Pathway and I sincerely hope many more Hospital Trusts sign up to the NBCP and adopt the standards – I truly believe that parent-centred care, having a separate room, having trained staff and being able to make memories with Charlie and Joshua made so much difference to our grief.