I think my brain is starting to feel settled with the results from Leo’s post mortem. Or at least, from there review of his pregnancy. We had another appointment yesterday with a different doctor, and we gained a lot more detail and information – and quite a different explanation of things.
The doctor we saw was a Fetal Medicine doctor and was actually the second doctor who came in to confirm Leo’s death. I didn’t recognise her, but The Wife did.
If you need a visual, she was an Irish Power Woman. Compassionate, but assertive. Someone I think we’d trust in a crisis. Someone we trust right now. Which is really helpful, and needed.
She explained a lot of the background and justifications of why they do this and that. Whilst we may never truly accept it – because we sit on the wrong side of the statistics – we understand it, and I think that’s important. I appreciate that guidelines need to happen and that they are evidenced based and help to place interventions to the most appropriate people. Normal distribution curves and all of those things are useful and valid. It’s just when the blueprint doesn’t fit your son, and that means he dies, it’s pretty shitty.
So, this is how I understand why Leo died currently. Part of this is joining the limited dots of information that they have, but I feel that’s safer than just leaving it at “unexplained”. I’d rather people make educated assumptions, than accept that he just died and that’s all they know.
Leo had a small placenta compared to his weight (no reason for this and something they can’t scan for). To assess placental function in growth scans they currently look at the umbilical blood flow. However, this is historically used in babies who are small, i.e. In the bottom 5th percent of babies on the normal distribution curve. The blood flow assessment is now used as a proxy measure of placental function for all babies that have growth scans at our hospital, but is used with the awareness that it’s accuracy declines with gestation.
Leo started pushing into the higher range of the normal distribution curve for this measurement at 32 weeks. His growth also slowed – he wasn’t on the line he looked to be on from his earlier scans (he was on 95th for size, and slowly moved to the 35th by the time he was born). At 32 weeks the drop seen wasn’t classed as significant and he was still in normal ranges – so it wasn’t really a concern. By 36 weeks, he was still growing and within normal ranges but his blood flow measure pushed a little higher. This scan was on the Tuesday before he died. We were scheduled to have this reassessed on the Friday. He died on the Thursday.
There is something that they can assess for which is a more accurate measure and they’ve been working on bringing in as standard for growth scans. This new measure is the ratio of blood flow to the brain compared to the umbilical blood flow. This is a stronger indication of placental function for babies in the normal weight ranges – where a lot of stillbirths happen, and when they aren’t always classed as high risk during pregnancy because they are appearing “normal”.
So, the assumption is that this ratio would have been poor for Leo. However, as Leo’s weight was within normal ranges – the recommendation based on evidence would have been an induction at 40 weeks. He still wouldn’t have made it.
If he had been small, we would have been induced at 37 weeks. He died at 37+1. He may have made it, he may not have. Timings would have been a massive factor here.
The way I see it, Leo was simply too polite with his issues. He had a problem, but didn’t make a song and dance of it all. His placenta wasn’t doing enough for him, but he was pushing on and growing just fine, until he couldn’t anymore. He was too big to trigger any major concern. His own weight hid what was really happening. He simply failed to maintain his growth projections.
Oh my little Leo, why didn’t you just ask for help.
We will still go see a specialist and see if he concurs with this assumption and if any recommendations can be made of the back of it. This second doctor at our hospital has recommended that she would happily scan us and assess this new measurement fortnightly from 20 weeks, a dose of baby aspirin from 12 weeks to help the placenta, and monitoring for any form of growth restriction. This is much more of a comfort that the “same again” response our first doctor gave us.
It somewhat pains us that they can offer this level of support when statistically they reckon our increased risk of this repeating is still incredibly small. Our risk was incredibly small in the first place, but it still happened. What a wonderful world if there were no resource limits to anyone. It takes loosing a child for it to be offered, without question. I think all bereaved parents have a new view of statistics.
I am underestimating how exhausting this month is becoming. I think it’s starting to filter in this week.
5 thoughts on “Leo, You Were Simply Too Polite ”
It’s so much to take in! You find yourself trying to interpret a new language and world of information. No wonder you are exhausted! I’m glad though that they were able to tell you some information that made sense even if there was no comfort to be found there. I haven’t heard of the new bloodflow ratio that you’ve mentioned so will ask my doctor about that as she has also said the uterine artery dopplers are now meaningless at my stage (33 weeks) and the umbilical artery Doppler is still useful but only really until 37 weeks which is why we are delivering at 36+6.
I hope you have some plans for nice nurturing things to do to counteract the challenge of all the reviews. I know I found the period after our postmortem results a particularly hard time. Take care xx
I just typed a reply and my app cancelled it out! But she termed it ‘cerebroplacental ratio’ or CPR. I hope I have understood and translated it correctly though. I’m amazed with how much it is still changing. Positive thoughts your way for the next few weeks xxx
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Thank you, I’ll ask my doctor about it next week x
I hate statistics too. In our post mortem review we were just drowned in them by the Head of Obstetrics.. 0.5% chance of having a true knot in your cord and dying from it. Five times more likely to have another stillbirth but the chance of two in a row lowers it to 2% or was it 4%? As you said, it’s all meaningless when you’ve been on the wrong end of statistics.. “Only 2%? Oh goodie, I can relax now because I’m bound to be in the 98% that are okay…. Except, WE WERE THE 0.5% LAST TIME!!!”
How can the medics think spouting stats will make us feel better or reassured?!
We had the CPR measured by the Fetal Medicine Team at Addenbrookes. We also had fortnightly growth scans as I was gestational diabetic with a septate uterus.
I remember cooing over how clever it all was and how amazing that they could measure the blood flowing to Freddie’s brain… And then when I went in four times with reduced movements they didn’t once give me an ultrasound to look for reasons behind the RM!
I don’t want to sound like Debbie Downer but I feel so cynical now about whether all these extra scans can actually protect our babies when the midwifes and doctors staffing the machines are negligent.. Leo and Freddie should be here, not part of the 0.5% xx
Yes, they really should be here. It’s frustrating because everything they keep telling me still would haven’t saved Leo. It might save others and I try and hold on to that, because we can’t turn back the clock and get him back.. But I can’t help but think there will be others missed like this. I am so saddened to hear that you went in that many times for movements and still ended up here, it’s so frustrating. I never went in for Leo, other than when he had died and I already knew he had, but I still don’t think the whole movements thing is being communicated by the right people, well enough. It is only now that I am learning about it all. Which isn’t really that helpful! Take care, go gentle xx
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