How health professionals can improve the experience of parents after a baby or child dies in hospital

by Shona Johnston, a bereaved parent who has previously worked as a paediatrician

Healthcare professionals shouldn't be scared to have those difficult conversations because they’re worried about saying the wrong thing. It’s far  better to acknowledge what has happened to a bereaved parent - saying nothing is far worse.

After our daughter Gail died, we were able to spend two days with her in the bereavement suite. It made such a difference to our ongoing grief. She died just before she was born, so this precious time was about getting to know her and recognising that she was a real baby, a real person. It gave me the opportunity to transition into being a mother, before we said goodbye to her body, in a sort of bubble away from the world.

In my view, hospital systems could be better organised to ensure all families bereaved of a baby or child can have time with them at the hospital, in a bereavement suite or in a cold cot or a bed, so that they're enabled to be with their child and spend time to perhaps read books or cuddle them.

I feel that many families, particularly those with older children, don't get that opportunity or the information to make a choice about what they want to do. They may want to go home – and that’s fine if that’s their decision – but I feel many are rushed out of hospital and not given that opportunity to spend time with their child.

It’s also important that memory making is facilitated. While families need to have choices, to some extent professionals need to make this a slightly leading choice; families can regret not doing it in the long term, although it can feel incredibly difficult in the moment. It’s about giving the family options, perhaps by saying things like, ‘How helpful would it be for you to do this?’ 

I was a trained healthcare professional and knew you could do prints and cast of your child’s hand and feet, but I didn’t know I could have Gail in a cold cot or what the benefits of staying with her for a period of time were. I was quite worried that somebody would suddenly take her away and I would have really appreciated someone telling me that it was OK to stay with her.

In terms of signposting to further support, it’s important to acknowledge that some families may not want or need support or counselling but there will be others who could really benefit. Healthcare professionals shouldn't be scared to have those difficult conversations with parents (which can often be the elephant in the room) because they’re worried about saying the wrong thing. It’s far better to acknowledge what has happened to a bereaved parent - saying nothing is far worse. 

Healthcare professionals also need more training on how to speak to bereaved parents over the longer term, acknowledging that grief doesn't go away completely and is always part of the family situation. Even a little acknowledgement of what's happened such as, ‘I was so sorry to hear that your baby died. Would you like to talk about her?’ can help.

In my subsequent pregnancy after Gail died, I would sometimes go into an appointment wondering if they knew what had happened because they hadn't mentioned it. I was happy to talk about her, but it gets exhausting having to bring it up again and again.

Unfortunately, healthcare professionals often aren't equipped to deal with a situation that’s seen as relatively rare. The key to better supporting bereaved parents is communication skills and having systems in place. There’s lots of good practice around bereavement care, but often different disciplines work in silos and don’t share. My wish is that they could join forces and learn from one another. 

Shona Johnston is a co-author of the paper Child bereavement-what matters to the families. Part 1: Immediate and short-term communication and care.

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