In September 2022, we lost our little girl at 18 weeks having gone into spontaneous labour, turning our world upside down. Trying to navigate this trauma, grief and loss was the hardest thing either of us have ever had to do.
We decided an hour after I gave birth to our perfect, tiny little baby, that we needed to know why this happened and opted for a full postmortem investigation. We both understood that quite often, no clear reasons can be found, however, we both knew we would want some assurances if we were to consider trying again.
At the time we were advised that the results would take around three months, so we began our grief process, living on autopilot. We realised that putting our lives on hold and waiting for our results could take longer than three months or could hold no answers, so we decided to try again, and I am so glad we took this stance, due to what was to come.
I found out I was pregnant three months following our loss, quicker than expected but what felt to be a potential light at the end of a tunnel. I was put under specialist care at my local hospital (protocol when having suffered a late miscarriage) supported by a specialist bereavement midwife. When first seeing her at around nine weeks into my subsequent pregnancy, I was advised that whilst postmortem results used to take three months, some were now taking up to six months due to a lack of perinatal pathologists.
At my initial consultant review, we were given the first opportunity to ask if any of our postmortem results were back. The consultant apologised that she did not have many details but was able to tell us that our baby had been female. Finally, it felt like we could start to mourn the baby we lost, whilst trying to separate this from the thoughts of our new pregnancy. This was the first bit of information we had been given following our loss 22 weeks earlier.
It took us a day before 40 weeks following our loss for us to finally get our answers, that there appeared to be a possible infection in a swab taken, but otherwise there was nothing clear on why we lost our baby. We had already reconciled ourselves to never getting an answer, but after receiving the results, we could at last start to compartmentalise and process our grief further.
We felt robbed of being able to move forward following our loss, always waiting for results, hoping that this time it would be ok, and that there was not a reason we lost her that could impact my risk in the pregnancy I was experiencing and any future pregnancies. As many bereaved parents say during pregnancy, neither myself nor my husband could truly believe this pregnancy would be ok, both guarding ourselves from the heartbreak that could come again. We still guard ourselves now, with a wonderful healthy 11-week-old baby boy, having joined us, never quite believing he won’t be suddenly taken from us.
The waiting and delays have meant that we have struggled to bond with our baby because we didn’t get what we needed in time to process our grief. I have no doubt this could have been improved by getting our results earlier. We will never be the same people as we were before suffering pregnancy loss, and this will have an impact on us forever.
Results delays are a postcode lottery, with those in certain areas getting them within three months and others still waiting for results over 12 months from their loss. The inequity is so impactful for those waiting and waiting, their lives in limbo, like ours was.
If sharing our experience of the impact in delays in perinatal pathology can help support change in the system to ensure other people do not suffer the same fate, we feel this can only be a positive thing.
Sands have shown how dedicated they are to listening to those they help and how passionate they are with wanting to make lasting positive change in maternity and postnatal care services for those that have suffered loss. That’s why I was proud to speak about my experience at a recent parliamentary meeting on baby loss and share a parents’ perspective on how current practice is negatively affecting those experiencing loss. This allowed our story to be heard by MPs and those working in different areas of bereavement care and gave hope that this could be avoided for others in the future.
Anything that can be done to try and reduce the chance of pregnancy or baby loss and research into any elements that can help predict a person’s risk of loss, can only be a good thing. That’s why I am keen to share my voice wherever I can to make sure that change happens.