So often talks and forums about pregnancy and birth focus on normality, meaning it was wonderful for we neonatal parents to have a chance to have our say.
The National Maternity Review held four sessions for parents who had experienced complications in pregnancy and birth; whose baby had stayed in a neonatal unit; and who had lost a baby before or after birth.
Back in June I wrote about what I wanted the review team to know, and in July after the first birthtank event I expressed my frustration that while overall it was very good, it missed neonatal care, complications, and postnatal mental health.
That meant I was very heartened when I discovered Bliss and SANDS had worked really hard to set up additional events to hear the voices of parents like me.
I must confess I travelled to London last Friday with a degree of trepidation. It was because I have been to so many other events where I have left upset and frustrated not only due to the nature of my story but because of a lack of understanding, compassion, and sensitivity.
Thankfully, my fears were unfounded. While the event was difficult at times – telling my story, what happened to me and to Hugo involves reliving some horrific trauma that I would not wish on anyone – I am glad I went.
We received warm greetings from the Bliss and review team members in attendance.
We were separated in to groups according to roughly similar experiences. We agreed to keep the discussion confidential, so I will not reveal any details.
We each told our stories. There were many tears. Perhaps most importantly (it was invaluable to me, at any rate) we listened to each other with quiet respect, and mutual understanding.
While our stories are different, we share in common the terror of the rug suddenly being pulled out from under our feet with little warning. We share in common the fear (whether potential or actual) of losing our precious baby. We share in common the trauma of visiting our brand-new tiny human being in a plastic box, attached to wires and bleeping machines, unable to touch them and at the mercy of a team of strangers (however wonderful the neonatal teams caring for our babies are).
I relished in the company of these brave fellow neonatal parents not feeling, for once, like the ‘different one’.
It may not surprise you to learn that the common themes from the discussion were:
Language and communication
Treating the woman as an individual, listening to her and respecting what she says
Continuity of care
For some of these families, better clinical care may have led to better outcomes. But for me and other families there is nothing (not even all the beanbags and soft lighting the world has to offer) would have changed the outcome. I am heartened that there is a focus on getting the care, communication and pathways right for us.
If you would like to have your say about your experiences please do take the time to complete the National Maternity Review Survey which is open until next Monday, November 30.
As the chair of the review, Baroness Julia Cumberledge says there is nothing more important than personal testimony.
All the feedback will be compiled and produced in a report to be released by the end of December. I was heartened to hear Baroness Cumberledge say that change will take more than pretty words in a report – we need huge cultural and behavioural change that starts on the ground. This is where movements like #MatExp come in.
#MatExp is a grassroots movement where there are no hierarchies: we collaborate to make a difference to women, families, and the staff who care for them. Every voice is valid, and every contribution is valued. If you would like to get involved, check out our website, take a look at the #MatExp hashtag on Twitter, or you can join the Facebook group.
I was pleased to be able to have a brief chat with Baroness Cumberledge, and was really touched to learn she knows about Hugo and has read my blog.
Thank you to everyone involved for a very constructive morning. The strain of reliving the trauma feels mitigated when reassured it is for a purpose, and that Hugo’s Legacy is having an impact.