Beyond Bea Bereavement Study Day

Earlier in October I spoke to healthcare professionals about Henry and my experience as a bereaved parent at a bereavement care and memory making study day run by Beyond Bea Charity. There are so many things I could have spoken about so I focused on the continuing bond I still have with Henry and how early memory making can helped with this. This is a slightly adapted version of the talk I gave on the day and should be relevant for anyone who cares for parents around the time their baby has died. I have highlighted practical advice in bold.

Death does not end a relationship
I knew nothing about baby loss before Henry died. I didn’t know what memory making resources existed. I didn’t feel confident about what I was ‘allowed’ to do with him. I didn’t realise the importance of the time we had together; I knew he was dead and that he wasn’t coming home with us but the full implications of what this meant hadn’t sunk in. I relied on others to know what was available, I needed the support of those caring for us to help us make memories and collect keepsakes, I needed others just to refer to me as a mother and to say Henry’s name.

As maternity workers you are there when people become parents, you send new parents out into the world at the start of their parenting journey. Usually this is with a living child but even when a baby dies you’re still sending new parents out into the world, it’s just their parenthood will be a different one, it will involve different challenges and others won’t always know how to help. You’re in a position to give those parents the best possible start.

During the very early days after Henry died I couldn’t imagine what our future looked like, or how I was still a mother. I dreaded his funeral being over, I worried that once it was that would be it, there would be nothing else I could to do for him and my role as his mother would end. I needn’t have worried. Something I want you to understand when working with bereaved parents is that death does not end a relationship. All the love you have as a parent doesn’t ever go away. I didn’t stop being a mother when Henry died and he didn’t stop being my child.

A Lifetime of Memories
We were shown a lot of compassion in hospital after Henry died but hospitals are busy places and bereavement care takes time. We had less than 24 hours with him before he had to go away to another hospital for a coroner ordered post mortem, we barely had time to say hello and no time to say goodbye. Eight days after Henry’s death we were discharged into the care of Forget Me Not children’s hospice in Huddersfield and this decision was probably one of the most instrumental ones in our journey as bereaved parents. Here we spent a week with Henry in our own private family suite, it was calm and unrushed, a peaceful environment just for us. We took photos, listened to music, watched TV shows and read stories. We were encouraged to do normal things with him; we changed his clothes, brushed his hair, and I put him into one of the cloth nappies I’d spent hours painstakingly researching. I held him as much as I could, aware that I never would again. The music we listened to (Bruce Springsteen), the TV shows we watched (episodes of Old Bear), and the stories we read with him while at the hospice are all now his things and are important links back to him. The act of dressing him, and caring for his body, changing his nappy, brushing his hair helped me to feel like his mum in a practical way. The photos we have of our time there are reminders that he was real. Just being with him, doing these things with him helped us to actually feel like his parents. Most importantly though we got some time with him. This opportunity to make some memories and to spend some time with him was important. It will never be enough, we should have had years, a whole life time with him but it was something, a chance to say hello and goodbye.

Martin and I spend a lot of time outdoors. Henry was born and then died in hospital and I hated the idea that he never went outdoors so once we were at the hospice I took him out into the small yard outside the family suite so he could have the sun and the breeze on his face. Someone at the hospice suggested we could take him for a walk, they brought a pram for us to use and we walked with him around the hospice grounds. This is exactly what I wanted but I hadn’t been sure whether we could so I hadn’t asked. I’m glad we were able to do this, it was important to me that Henry got to go outdoors. When you’re helping parents with memory making try and find out if there is anything particularly important to the parents: a coming home outfit they’d bought or a birth announcement photo they’d planned and as far as is possible try to facilitate this happening

Finding a Community
We held Henry’s funeral a few days after leaving the hospice and then began the rest of our lives without him.

Like any new parent I wanted the whole world to know about Henry, in those early days all I wanted to do was talk about him but those conversations were hard to start or keep going. A few weeks after his death I posted his photo on Instagram and added the baby loss hashtag and in doing so came across a community of other bereaved parents. These parents helped me so much through those early months, they gave me ideas for how Henry could still be included in our lives, at times reassured me that I wasn’t going crazy in grief, they gave me confidence to talk about Henry and made me realise that his death wasn’t the end of our relationship.

If you care for bereaved parents I’d suggest finding out what support groups are locally to you so you can signpost parents to them. Speak to bereaved parents find out what they’ve found useful, follow the hashtags on social media and if you find something new let your bereavement midwife know. I found support online, and through parent groups at the hospice but there are also Sands groups, hospital bereavement groups and other local support groups. Finding a community of other parents who’d experienced infant death was one of the most useful things for me going forward from Henry’s death, it helped me feel less alone and gave me confidence in myself to be Henry’s mother.

Creating Space for Henry
Henry should be here, going out into the world and making space for himself but since he isn’t I see my role as his mother as creating some space for him. Day to day this simply means speaking his name and telling people about him; when I’m asked if Merryn is my first I’ll always tell them I have a son too. Martin and I have done various fundraising in his name. I donate breast milk to a milk bank because of Henry, it’s something I wish I’d known about when he died and it is something I probably wouldn’t have done if not for him. I write as a way to create space for him: here on this blog, on Instagram and any other opportunity I can find, earlier this year I spoke to the Guardian newspaper about how I’d donated my wedding dress to make funeral gowns for babies, anything to get more information about baby loss out there. Talking about him here today is also a way of creating space for him, this is a room full of people who have now heard his name, seen his photo, who now know he existed and who now know how proud I am of him.

Two Years In
We have just celebrated Henry’s 2nd birthday. I made him a birthday cake, we visited his woodland burial site and had fish and chips at the seaside.
I asked friends and family to send photos of his name; I can go for weeks not hearing another person, besides my husband, say his name and there’s something quite powerful when someone else says or writes his name. It’s a reminder that he isn’t forgotten.

We also wanted to do something in Henry’s name to benefit other parents. We’d read stories with Henry at the hospice and those stories are now a special link back to him, so for his birthday we donated books to the bereavement suite at Bradford Hospital for parents to share with their babies during their time there. I hope these books will help parents create memories with their babies that they can hold onto as they navigate their own parenting journey.

Nothing will ever make up for Henry not being here but I am grateful for the opportunities we were given after he died to create some last memories with him, the good care we received during those early days helped lay the foundations for the strong bonds that we’ve continued to have with Henry ever since.

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