About a month ago I did a talk on my experiences for a group of paediatric registrars. This is my talk.
Thank you. My name is Shona Johnston and I am a post-CCT clinical fellow in paediatric haematology/oncology.
We will discuss two things today:
1) With my mummy hat on, I am going to share my own story with you, what happened to me, and a little about Grief.
2) With my doctor hat on, discuss some aspects of bereavement care and some quotes and points of view from other bereaved parents.
Then hopefully if there is time a discussion on the barriers to really listening to patients, and how you can really listen to them.
I just want to add a trigger warning here that people may find some of my story upsetting. Its ok if you get upset, but please try to bear with me, and I am happy to chat through any issues with anyone afterwards and point you to other support if needed. I want you to learn from my story.
So I told you that I’m a paediatric doctor. I am also a mummy to two little girls: Freya who is 5 years old and Gail who was stillborn at full term in June 2016. She died not long before she was born and she was perfect. There was no medical explanation for her death. She looked exactly like her sister except that she had black, black hair.
She was born here, in the women’s centre in this hospital. I went with my husband to MAU on a Saturday morning when I was 40+4 because she had stopped moving. When I was seen she had already died. After some time, we went home to with our older daughter. I went into labour that night and returned to the JR. We were initially on level 7 in the bereavement suite, then after a little delay we were moved down to labour suite when I was in active labour. Not long after I was in second stage and then had a normal delivery. I had a retained placenta so had a manual removal in theatre a few hours later.
Some hours later we went back up to level 7, where we were able to spend two very precious days with Gail. Our care was outstanding. The midwife who cared for us was my community midwife and the continuity was so important to me. Gail was in a cold cot, meaning slower deterioration in her condition. It enabled us time to cuddle her, to read stories to her, to bathe her. The bereavement suite is an en suite, and has a drop down bed my husband could have stayed in had he chosen to, and he was provided with hospital meals. We were given a beautiful memory box and a lot of Sands leaflets detailing all these strange practicalities we would need to go through. The chaplain came to talk to us, and to bless Gail. My paediatric colleague friends and my parents came and went with a blind eye turned to visiting times. We could be in a little bubble away from everything. The staff told me how beautiful she was and they encouraged me to spend time with her, and to cry. I have no regrets of our time with Gail, and the care and my memories of that time has made a significant positive effect on my grieving.
Our care was outstanding, but still improvements in bereavement care can be made – and I’ll share some specific things which could have been better in my case, and some questions for you to think about.
When I was in labour ward and wheeled through to theatre, the ODP asked what I had had. It was obvious she hadn’t known when I had to reply “a girl, but she died.” A simple error in communication which upset me so much.
The midwife continuity was excellent, but I saw a different obstetrician every day, and we had our debrief with a different consultant from the one who had done my MROP (who while I knew him and entirely trusted his opinion, he hadn’t been involved in my care before).
My discharge letter written to my GP only said “IUD” on it. To me, this was such a gross understatement of what I had been through and was continuing to go through. I made an appointment with her just to fill in the blanks.
We were given a contact number for the bereavement midwife but when I texted her some time down the line for support I got no answer. I felt very vulnerable and needed someone to advocate for me so I didn’t try again for about six months. I could have done with some proactive support from her. When I did eventually have the energy to make contact again it was harder than it should have been to make an appointment. If it was difficult for me, as someone who “knows” how the system works, how would it be for someone who doesn’t?
I am a paediatrician – a reasonably good one I like to think! – And I would not have thought about how important some of these things are – both the good and the bad things – before Gail died.
When your baby dies, you have to make a whole bunch of decisions that you had never thought in a million years you would need to think about. Practicalities that seem ridiculous in the hazy fog. Which funeral director will you use? Do you want your baby buried or cremated? Where? What kind of coffin would you like? Do you want a private or open funeral? Which music? Do you want to buy a plot of ground next to her so you can join her eventually?
In the day between finding out that Gail had died and her birth, it became apparent that we very much wanted to take Gail “home” to Orkney. We live in the South of England now, but we won’t necessarily be here forever. We both have family in Orkney and it is somewhere we will always go back to. So we took her home, and my parents drove her there.
They took the bravest and saddest journey and never left her alone. They stopped on route with my granny and at their own house.
Gail is buried on a beautiful hillside, looking out to the sea. The location couldn’t be more perfect.
I’m going to tell you a little about Grief, by reading from my blog.
You can read this here: The immediate aftermath
Its been a long pathway.
BUT – I want people to know that it is possible to find Joy again. That doesn’t mean that the grief goes away: sadness and joy exist right alongside each other. In fact I now truly believe that it is possible not just to survive, but to live well and be happy in this “new normal”. It’s a different kind of happy; and will always tinged with a wish that Gail was with us. And this is Freya blowing bubbles for her little sister at her grave in Orkney over the summer.
Our care was outstanding, and I do not believe that anyone was to blame for Gail’s death, but still I feel that lessons can and should be learned from every baby death, and that particularly we should learn from bereaved parents about their experiences to improve the care we give. We need to listen – really listen.
I want to share some experiences from other bereaved parents, who have all given me permission to share these quotes. I asked them “what do you want paediatric professionals to know about child bereavement and life after loss?”
[I am not going to share these quotes here on my blog, but the general themes were: acknowledge the death of the child kindly and humanly – and continue to do so for many years afterwards; give parents and families choice where it is possible to do so; explain legal processes and why there has to be police presence after a sudden and unexpected death; allow time with the child after death; know that grief is not proportional to gestation or age at death; understand that pregnancy and parenting after loss are difficult and stressful; and most importantly – use the child’s name.]
So we’re going to talk about elephants – elephants in the room, that is:
I had a recent visit to MAU (maternity assessment unit) where I saw a number of midwives and obstetricians. On my maternity notes I have a butterfly sticker (the trust’s way of recognising previous pregnancy loss) AND a Kick’s Count sticker saying “I’ve had a previous stillbirth.” Everyone I saw had clocked that I’m a paediatrician – not one of them mentioned Gail.
It left me somewhat confused – did they not know about my previous obstetric history even though its all over my notes? (highly relevant both to why I was there and why I was so worried) Or did they know and just didn’t want to mention it for fear of upsetting me? As it was it meant that I had to keep telling the professionals that I had had a previous term stillbirth. Bereaved families love talking about their children – they hate going through their story again and again with medical and nursing staff.
[I’ll just add as an aside that I was very happy with my medical care, everything was fine and I went home later that day.]
I then invited the audience to discuss the barriers to listening to parents and talking about the death of a baby or child, particularly if they are presenting with another child sometime down the line.
Themes that came up were “I don’t know what to say”, “I don’t want to upset them”, “I don’t want to upset their children if they are in the room”, “I might not have time in a busy A&E department to discuss it.”
I then discussed that the vast majority of parents are more likely to be upset and confused if you DON’T talk about their child; nothing makes me smile more than hearing Gail’s name. What to say: something simple, heartfelt and human. Something like: “I heard from the nurse that your baby [use baby’s name] died. I’m so sorry to hear that. Do you want to talk about him/her?” or just “I’m so sorry to hear about [baby’s name’s] death.”
It doesn’t take much but can mean the world.
I spoke about Freya and how she is is very open and matter of fact about death – “My sister Gail died and she’s under the ground.” Children don’t pay attention to elephants in the room – so why should we?
I understand time pressures in a busy department – however I suggest that, just occasionally, if you take an extra two minutes to listen in the first place, it can save many more minutes further down the line.
These are a few useful resources that are either useful for health professionals or leaflets that can be given to parents; in particular – the new National Bereavement Care Pathway which has just been published, an e-learning course that is aimed at GPs but open to anyone who registers with the RCGP website, Child Bereavement UK info sheets (particularly useful for siblings), the Sands support leaflets [which I was also fortunate to be able to give out at the session thanks to Oxfordshire Sands], leaflets form the Lullaby Trust, a leaflet for families of children dying from cancer, and a couple of government resources on legal and financial aspects of child death.
[There are hundred more resources out there, I just picked a few of my favourites.]
This is how I’d like to see bereavement care and support – like a hug around the family.
Hopefully the diagram is self explanatory but these are the elements I’d like to see; these are all part of the National Bereavement Care Pathway:
Well trained staff who are confident in dealing with child death and bereaved families.
Family input into service development.
A homely (ie non clinical) bereavement suite or area where families can spend time with their child, making memories to last a lifetime.
Family-led care, so they are able to make their own choices.
Ongoing family support after discharge from hospital.
And finally, staff support. Dealing with child death is not easy for anyone and staff need to be appropriately supported so they are able to support bereaved families.
So, these are the three things I’d like you to remember:
- Don’t be afraid to talk about elephants.
- Always, always, use the baby or child’s name.
- This is my daughter Gail, and she was beautiful.
With a big thanks to Oxfordshire Sands for providing Family Support Packs and other information for the doctors to read.