How do you parent a baby who has died? This is a question my partner and I were left with when our son, Sasha, was stillborn in January 2022. We had all this overflowing love and care in our hearts, and no living baby to give it to. People don’t like to think about baby loss. It’s simply too sad and shocking for most. So, for us, keeping Sasha’s name alive and trying to speak the truth of his life and death became one of the ways we parented him.
Being unheard is one of the most common experiences that unites bereaved families. It is not only that many of us fear stigma or hurtful reactions when we speak about our babies. Many parents, especially those from low-income or ethnic minority families, will have had their concerns during pregnancy ignored or not taken seriously by healthcare professionals. When the tragedy of a baby’s death occurs, it is often the case that our complaints are met with denial or obfuscation by the hospital. Many bereaved parents, particularly those who feel or know that their baby’s death could have been prevented, eventually come to expect that we will not be listened to, that our warnings or suggestions about maternity care in the UK will remain unheeded.
Now, I can say for the first time since my boy died, I know what it feels like to be listened to. When Wes Streeting invited bereaved families to speak with him about their losses and what needs to improve in UK maternity services, many expected that it would not lead to any meaningful change. And this nearly did happen.
But after presenting an overview of suggested actions to improve maternity services to bereaved parents – including those whose losses occurred at scandal-hit hospitals such as Nottingham, Shrewsbury and Telford, Leeds and Sussex – something did change. The health secretary openly acknowledged that the conventional approach to policy was not working. He said that he would work more closely with bereaved parents and head a task force that would include bereaved parents, promising to produce this policy together.
Witnessing the words of bereaved parents genuinely convince the health secretary and change the course of action felt like a miracle. Of course, it shouldn’t have. This should be how most decisions in our country are made – with the direct involvement of those closest to the issue. Not only did I feel lighter, but, for the first time since my son’s death, I felt hope that things might actually change.
Wes Streeting has realised something that many policymakers and NHS leaders before him have been unable to see. Bereaved parents are key to improving maternity care. We are not only experts by experience, having witnessed firsthand how things go wrong in maternity care. Whether by advocating for change, pursuing legal justice or following complaints procedures, we also amass a depth of knowledge of the wider healthcare system, from both a user and a technical experience perspective.
This is only the start of a much larger and longer process, but this new beginning is on the right track. I hope that policymakers continue to listen to us, to seriously consider our suggestions and learn from our losses, even though it is a more challenging process than traditional top-down decision making.
I hope that they realise that we are their biggest and most trustworthy asset for improving maternity care. We have nothing to personally gain, no reputations to protect, and we have already lost that which is most precious to us. We simply don’t want future parents and babies to go through what we did.
We want a future where parents can be confident they will receive safe care and be listened to when this goes wrong.
Tommy’s offers free specialist support after baby loss. Call 0800 0147 800 or email [email protected].
