I spoke in ‘Finding out why’ about Henry’s post-mortem and getting answers as to the cause of his death. One of the things I’m realising about pregnancy after loss is that it drags up all sorts of thoughts and emotions that you thought you’d processed, parked, and dealt with.
Yesterday we had our 16 week scan. Everything is fine. And yet today, I’m angry. Yesterday the hospital put a GROW (Gestation Related Optimal Weight) chart in Briony’s notes for the first time. They weren’t using this method in our local hospital when Henry died in April 2014. They started using it a few months later. The concept behind it is fairly intuitive – not all babies weigh the same.
Not all mums are the same height and weight, etc. Some smoke (although I REALLY wish they wouldn’t), some are diabetic. Pregnant mums are of all different ethnicities. All these things have been shown to have an impact on ideal size and growth of baby. So a personalised chart that calculates the size baby SHOULD be based on all those factors is going to be more accurate than a one-size-fits-all chart. Two babies can be exactly the same weight and one be growth-restricted and the other not, depending on these factors:
Last night I sat and looked at this chart for the first time. I’ve spoken at numerous conferences over the past couple of years relating to the Saving Babies Lives Care Bundle or other stillbirth reduction initiatives. I’ve talked about growth restriction and placental insufficiency many times.
I’ve listened to my incredible friend, the amazing Heidi Eldridge from MAMA Academy talk about safer pregnancy messaging and preventative measures to avoid bereavement care being required in the first place, and to help more babies arrive safely.
I’ve listened to Professor Jason Gardosi from the Perinatal Institute talk about these issues, and I’ve learnt diligently, following them with some vague layman’s understanding of it all.
So last night I sat and stared at this GROW chart (click here for more information about GROW charts), which we weren’t blessed with during Briony’s pregnancy with Henry.
This is what Briony’s GROW chart looks like. The middle line of the three is the 50th centile, the average. Bang on this line please for “not too big, not too small”. The top line is the 90th centile, if you’re plotting above that, you are having a BIG baby (often an issue for diabetic mums). The bottom line is the 10th centile – if you’re getting near to that line, or are plotting below it, your baby is most likely IUGR (intra-uterine growth restricted) – ‘small’ to you and I. This is significant because growth restriction has a clear association with increased risk of stillbirth and can be associated with other potential risk factors (like smoking or the result of placental problems).
And the first thing that caught my eye was the “previous baby details”:
TWO ASTERISKS! He got TWO! That must mean some serious growth restriction! Of course we already knew, from talking to many maternity professionals over the last couple of years, that Henry was severely growth restricted.
When I first presented “Henry’s Story” to many of the great and good of the maternity world, at the Leeds launch of the Saving Babies Lives Care Bundle in March 2016 (click here for more information about the Care Bundle, which is having a tremendous impact on reducing stillbirth rates in participating Trusts), I put his birth weight of 4lb 13.5oz up on one of my slides. I don’t know why I did that, just because it’s one of the things we tell other people about our newborn children, right? “Oh yes, he weighed in at a whopping x pounds, mother and baby doing fine, etc”. No-one batted an eyelid.
Eighteen months later, I was presenting at Royal Bolton Hospital to an audience of front line maternity staff. When Henry’s birth weight came up on the slide, there was a sharp audible intake of breath from, it sounded like, everyone in the auditorium. Now that struck me as significant progress, because professionals were starting to recognise at one glance something which I had come to know, and which previously wasn’t always being spotted.
So then I plotted on this GROW chart where Henry would have been, and the red cross I marked as a result was like a knife to the stomach:
Henry was in the bottom half of the 1st centile. So he’s actually recorded as “centile = 0”. He was as small as they come. The 10th centile (the bottom line, the marker for growth restriction) is as close to about the 70th centile as it is to Henry. Henry’s birth weight means he would be (should have been) flagged as growth-restricted at 34 weeks, a full four weeks before he was born. He’s even below the 50th centile at 33 weeks.
And it made me mad. The guilt comes back. The shock and numbness returns. The anger rears its ugly head again. This isn’t anger directed at anyone in particular, just raw grief coming back to the surface.
This reality of the cycle of grief manifests itself again:
All the questions come flying thick and fast –
Why weren’t they using this stuff back then?
Why wasn’t his growth restriction picked up?
Why did Henry have to die for us to be accessing all the incredible additional care we’re receiving this time around?
Wouldn’t Henry have survived with even a fraction of the extra care we’re getting this time around?
Why us? Why Henry?
Of course these questions aren’t all rational – why weren’t they using this method before they started using this method? Because that’s not how universal adoption of improvements in medical science works. Some NHS trusts are STILL not using this method, despite its proven track record in reducing stillbirth – a thought that makes me feel physically sick.
And the answer to the unspoken question “does any of this change our reality?” is, of course, “no”. Nothing that we can learn, or say, or do now will make the blindest bit of difference to the fact that when the word ‘plot’ is used relating to our son now, it’s more likely to be about a patch of land a mile and a half from our home where he’ll forever rest with his robins and squirrels than about his position on a growth chart.
Does that mean this anger is misplaced? No. In another trust, he might have survived. With different sonographers, he might have survived. With earlier intervention, he’d probably have survived. We’ll never know though, not really. That doesn’t make us angry AT anyone, none of our maternity professionals, not the Trust, just angry that it happened, and angry that it happened to us. We have every right to feel angry about that, even if it doesn’t achieve anything. Anger rarely achieves anything, but that doesn’t mean it’s not valid, and it doesn’t mean it’s not a legitimate part of the grieving process.
But this wave of powerful emotion that’s threatened to overwhelm me in the last 24 hours tells me two things, as I start to get a lid back on it:
More needs to done. There’s so much clear evidence out there about ways to reduce stillbirth, and yet there still isn’t universal adoption of changes in practice that have a clear and demonstrable effect.
Heidi’s MAMA Academy Wellbeing Wallets (click here for details), for instance, have been shown (both anecdotally and by more objective measures) to contribute to a reduction in stillbirth rates. Yet there are still many trusts who haven’t introduced them. They cost around 55p per pregnancy. For a trust the size of our local trust (which IS using them, because Our Angels have funded them), this is an outgoing of barely more than £1,000 a year. Fantastically we have just heard that following a year of these funded by our charity, our local hospital is budgeting to continue to provide them to pregnant women moving forward.
It’s a drop in the ocean.
The additional costs associated with handling a single stillbirth versus a live birth far outweigh this cost. I appreciate, of course, that there are budgetary concerns and other challenges, but the simple answer is best given by my great friend Juliette in her presentation at our York conference in February 2018 (click here to watch) – “FIND. ANOTHER. WAY”.
None of these obstacles to progress are insurmountable where there’s a sufficient desire to overcome them. Think laterally. Make things happen.
I was warned that this was the case, but I never fully appreciated it – pregnancy after loss is a massive, constant, head f*ck.
All the innocence: gone.
All the emotion: heightened.
All the fear: off the scale.
During Briony’s pregnancy with Henry – during Henry’s life, the only life he knew – we were swept along, being completely guided by the professionals. This time, I find myself sat in scans with my eyes shifting fearfully between watching the ultrasound screen and watching the sonographer’s face, desperately trying to read every facial expression or look, to see if they’ve spotted something untoward.
This time, like many other PAL parents I’ve spoken to, we are going to be the biggest pains in the arse for every maternity professional we come into contact with.
We’re going to push, question, fight, query, second-guess and challenge EVERYTHING – every single step of the way, and we’ll make absolutely NO apologies for it.
Because we didn’t know we needed to advocate for Henry, we were innocent, naïve and oblivious. But we damn sure know we need to fight for these babies, to do everything in our power to keep them safe and let them live here, not in the sky.
We’re so ultra-pragmatic now that we know that even all that might still not be enough. At any moment, this dream could end too, just like that, in the blink of an eye or a single beat of a tiny heart. But if they don’t get here, it won’t be because we haven’t done everything possible.
20 weeks to go.
One day at a time.