You don’t have to spend very much time walking the line between birthworker and bereaved parent before you realise that stillbirth is still this big, scary mystery.
9 years on from the death of my son, there is still much to be done to change the conversation about stillbirth. I regularly see parents who have lost a baby writing about the impact this has had on their lives. They often notice that suddenly pregnant friends don’t want to be around them, that they are avoided at the school gates. They have become “every parent’s worst nightmare” – through no fault of their own.
Stillbirth is still a taboo.
Despite movements and campaigns over the last 9 years including “Say Their Name”, Wave Of Light, International Bereaved Parents Day, increasing numbers of babyloss related blogs and Instagram Influencers stillbirth is #stillataboo.
For many years I have been an advocate of the need to do more to reduce the amount of stillbirths happening. At a local level, I have battled attitudes within healthcare professionals who appeared to have a very defeatist, deflective attitude. “Well we can’t do anything to stop stillbirth happening, it just happens” and “we don’t need to do anything, our rate is below the national average” being two of the replies that I heard in the early days. Thankfully our hospital became an early implementer of Saving Babies Lives.
As more and more hospitals implement innovative practice that aims to reduce the stillbirth rate, discussions are happening in pregnancy and parenting groups, and also in groups of birthworkers. Worryingly parents are still being given incorrect and outdated advice – both by other members of the group and from health professionals when they have sought help as well. The work of charities like Kicks Count and Mama Academy has improved the availability of consistent and up to date information and helped to raise awareness among parents about how they can check up on their baby in the belly.
But this awareness falls flat if the message isn’t consistent.
It is important that ALL health professionals in contact with parents, parents to be, and prospective parents to be are aware of up to date information and advice. And that these professionals don’t shy away from having difficult conversations.
Without fail, at every bereavement study day I deliver, professionals and students express concern about how to bring up potentially challenging topics with parents to be, like what the results of tests carried out may mean, like what to do if you notice your baby isn’t moving, like what do the centile lines in the growth charts actually indicate….
It is important to share health promotion messages. Health promotion messages needn’t be scary.
In order to raise awareness of stillbirth, we don’t need to show every pregnant person a picture of a stillborn baby, in the style of the images on packets of cigarettes. We don’t have to frighten people into making a change.
But why does it feel that way?
Why does it feel like if we talk to a pregnant person about the fact their baby may die, that we are jinxing their pregnancy? Why do antenatal classes shy away from discussing the things that might go wrong, so that parents are prepared? Simply sharing this information isn’t going to cause it to happen.
I may believe in the law of attraction but even I don’t believe that saying the word stillbirth is a curse. This isn’t a horror movie, if we say stillbirth 3 times in a mirror it won’t make it happen.
Let’s think about this rationally. Tell me what helps there to be a better outcome with a diagnosis of breast cancer?
I imagine you probably just said something along the lines of “finding a lump early”.
How do you know this? Well, if you are a lady, I imagine that at some point in your life you have seen a poster in a gp surgery, you have perhaps been shown by a gp how to check your boobs, perhaps you read a story in a magazine and something in that story stayed in your memory, perhaps you have seen facebook memes shared by a cancer charity?
As a healthcare professional, do you shy away from explaining the importance of breast checking, or cervical smears? Do you honestly think that every person you have that conversation with, ruminates on it, becomes frightened that they will get cancer tomorrow, becomes unable to live their life, paralyzed with fear? I think that is highly unlikely.
I imagine that most people file this information away in the section of their brain reserved for “useful but hopefully never needed information”.
Go have a search in your own private filing cabinet in your brain. I bet you can tell me the answers to “what should I do if there is blood in my poo,” “how do I make it safer for a child to eat grapes”, “what do I do if a child is choking on a grape”.
You probably have a whole encyclopedia in your brain filled with “what do I do if”….
I’d love it if everyone could view giving information about measures that can help to reduce the risk of stillbirth in the same way.
Let’s consider telling a parent to be about the importance of keeping an eye on their babies movement, to be as important as checking their breasts for lumps.
Let’s use the word stillbirth, as we use the word cancer. Not to scare, but to desensitise.
Let’s view seeking help from a professional when your baby isn’t moving, as as important as getting a lump checked – because we know that when a problem is caught early, there is a better prognosis.
Let’s view early detection and monitoring/intervention as tools to give parents choice about how best they wish to protect their babies life.
Let’s recognise that the methods we use to detect issues may not be perfect – but they are much better than the nothing we had before. Let’s invest time and funding into developing and improving them.
Let’s understand that interventions may not be ideal – as we understand that chemotherapy and radiotherapy may not be ideal. But they are a choice & often a life saving choice. Let’s build up the support available to those choosing intervention to give their baby the best chance – let’s put the equivalent of macmillan nurses in to support the intervention, let’s allocate people the equivalent of a named cancer nurse, let’s have 1:1 continuity of care, let’s improve the information provided about the emotional aspects of this journey and let’s put in aftercare to reduce the traumatic effects of the intervention – and if the worst DOES happen, lets pick up the pieces and provide the necessary support.
Stillbirth may be #stillataboo – but Saving Babies Lives needn’t be scary.