The Baby Loss Hub - Neonatal death - Reuben’s mum
Hi. I’m Rachel, first time-mum to our beautiful baby boy Reuben Gray-Sims born on the 2nd November 2021. I’m sorry if you find yourself here having also experienced losing your baby, that we have this in common.
I had a low-risk pregnancy right up until the point I was in labour. My partner, Adam, and I laboured at home for 11 hours, practising all our hypnobirthing techniques we had learnt and things were going well. Looking back, I’m so proud of us, we were such a team. Adam helping me with my breathing techniques and timing contractions. Both in a state of excited apprehension ‘watching’ Aladdin at 2am. As things were progressing I realised that I hadn’t felt Reuben move in a while, so we called MAU and decided to head to the hospital.
I walked (waddled) into the hospital one person and came out 9 days later a very different one.
It is only now, 6 months on, that I am able to write about what happened during those 9 days with some clarity as we finally have answers about what happened thanks to the HSIB investigation that took place into Reuben’s death.
Reuben was born with HIE and had to be resuscitated and transferred to the NICU straight away. We now know that I suffered a severe and sudden onset of Pre-eclampsia during labour. But we also know that mistakes were made with mine and Reuben’s care that resulted in him, a perfect and healthy 7lb baby, being born in such poor condition.
Once I have recovered from the operation and my blood pressure was stable, I was able to meet our beautiful boy for the first time. The next day, I held him and had skin to skin, a moment that has changed me forever.
Reuben made me feel things I have never felt before. A new depth of love for this perfect human we had created, for his loving Dad, and for my family who became grandparents, aunty and uncle for the first time. We were able to spend 8 precious days with Reuben in NICU, our families met and spent time with him and we created special memories. During this time, we were given the devastating news that Reuben’s brain damage was severe and global, that he would not survive long once the breathing support was removed. On the 10th of November, Reuben was moved to a nearby hospice where we spent special time as a family (including our dog, Luna!) with no tubes or machines, just us. Reuben passed away peacefully in his Dad’s arms on the 11th November.
I can only describe the period of time after this as a nightmare, one I continually thought that I’d surely wake up from. We simply didn’t know how this had come to be, we had no answers, only the promise of some once the investigation had concluded. Life was in-limbo. I started having weekly trauma therapy sessions with a Psychologist from the NICU at our hospital which I still have to this day, they have been a real life line. Sitting here, writing this 6 months on from Reuben’s birth, thinking about what happened still takes my breath away.
The HSIB report shared safety recommendations from what happened during Reuben’s birth with the trust, but we are now pursuing legal action. We are determined that his precious life isn’t simply a potential ‘learning curve’ for the trust, that we do all we can to ensure this doesn’t happen to other families.
I want to share things that have helped me these past 6 months in the hope that it may help you or someone you know. If you’d ever like to talk, please do reach out to me on Instagram: rachellouisesims and remembering_reuben_gs
This wonderful charity offers a gift of baby remembrance photography to UK parents experiencing the loss of their baby before, during or shortly after birth.
Your local NHS provider may offer this, each Trust seems different in this way.Bereavement midwives should be able to advise further on what support could be available to you, but you may need to advocate for yourself. I have found having trauma therapy sessions to be invaluable. I’ve developed coping strategies that help the trauma of my birth and loss to become less paralyzing. Whilst I still have a long way to go, I’m now able to enjoy looking at photos and video we have of our time with Reuben without the trauma side of things taking over and making that impossible. I’m finally able to grieve him with some peace.
Connecting with other loss mums and baby loss resources
It’s not a community you ever think you’d become a part of, or perhaps even reaslied existed! But, finding other loss mum’s through instagram, seeing their posts which resonated with me and reaching out to some has helped me SO much. It’s a heart-breaking thing to have in common, losing your baby, but knowing there is someone else that just ‘gets’ how you’re feeling is such a relief sometimes. Find accounts that you resonate with and hide ones that you don’t. Some I really like to name a few are:
This is inevitably a very personal choice but I’ve appreciated hearing and seeing ideas from other loss parents. I decided to dry and press Reuben’s flowers from his service and have now framed and hung them. They bring me joy as I think of him each time I pass by them.
I’ve recently placed an order for a memorial ashes ring from a beautiful Canadian jeweller I found called Gems and Juniper, I like the idea of having Reuben always with me. My family gifted us a beautiful personalised wooden keepsakes box where we keep all of Reuben’s things that we have. I like being able to sit and look through his things, knowing there all in one safe and special place.
This amazing chairty offer free bereavement counselling sessions to individuals or couples who have experienced loss. This has been a real life-line for us as we found ourselves unable to support each other fully as we both struggled to come to terms with this new reality. We were together in this but going through things very differently, which was at times really challenging for us both. Having these sessions provided us with an opportunity to reconnect.
This charity supports families who have experienced pre-eclampsia and loss. Thorugh them we were able to speak to a specialist consultant about our specific case and gain expert information regarding future family planning and my health.
At first, I found any sense of normality, joy, satisfaction or even relaxedness really disturbing - it felt wrong somehow. But as the initial acute shock subsided and I soon realised that life continued on regardless, I started to look for things that I could control in what felt like an out-of-control situation. For me, taking on some DIY projects really helped me to focus my mind and move around. I found some solace in creating simple to do task lists each day, it helped me to feel a little more steady.
Later on I decided to try the Couch to 5km programme again. I am not a runner in any sense of the word but it’s really helped me to focus on a goal and feel progress, knowing that it’s helping my overal health.
I also returned to using the Headspace app, I’ve found the grief programme in particular really helpful. It helped me gained some distance from the many intrusive thoughts I experience and enables a place to sit with my feelings of grief with more ease.
I’ve been able to have ‘Reuben time’ with a few close friends and I found that each time I shared our story and photos and videos of Reuben, it became a little less traumatic and more of a special moment to open up. I was able to put words to our loss and time with Reuben, I created a narrative both of my own and with my partner - it becomes your story.
One thing I had to quickly learn was to develop boundaries that help me to navigate interaction with others in life about losing Reuben. People, despite most having good intentions, will inevitably say the wrong things, or things that don’t resonate with you about your loss. It is NOT your job to make your loss easier for other people to hear.
I refuse to acknowledge when people say to me that I’m ‘so brave’ to have ‘gotten through it’. In my mind, it’s not something I’m going to simply ‘get through’, but I am trying to move forward. I can never accept losing Reuben, but I realise now that acceptance for this unexpected reality is something that is constantly evolving and manifests itself through all the little decisions that Adam and I make. For example, making travel plans, or planning to return to work.
I’ve learnt to calmly but assertively explain my stance if people say something I find abrasive, such as ‘Reuben’s in a better place’. To this I would now say, ‘hearing that upsets me as there is no better place than with me’. Or even just knowing what to say when someone asks you, ‘so do you have kids?’. At first, I’d say ‘no, I don’t’ as I was simply paralysed by what to say. I’d then return home and feel angry that I hadn’t acknowledged Reuben.
I spoke to another loss Mum about this and she shared how she’d found the same and as a result, had created a one sentence response that is her go to now. Mine is: ‘Yes, but my son Reuben passed away when he was 9 days old’. Sure, it’s awkward as hell. But ultimately, this typical question holds a lot more weight for many people than is actually realised. I like to think that I’m creating more awareness for this and of course, acknowledging by beautiful baby boy as well.
Time defiantly carries you forward, so my advice would be to do whatever feels right for you and know that it’s an evolving situation. Take care of yourself by being kind to yourself, and please know that you are sadly not alone in this.