Baby loss milestones and test results

on

Just like after the birth of a live baby, when a baby dies there are lots of milestones to be met. You need to register the stillbirth or death of the baby, wait for baby to have post-mortem, plan a funeral service for baby, go to the funeral itself, have further blood tests, wait for results of said blood tests and finally wait for the result of the post-mortem. There are also other smaller milestones in there such as waiting for a home visit from the midwife, waiting for casts of hand and feet, waiting for delivery of photo album. These may be small details, but they bear such huge importance. All of this dragged over a period of at least 12 weeks.

12 weeks of imagining every possible reason of why Beatrice has died. I’ve put myself into every possible scenario, tried to think of any signs and symptoms I might have missed. My mind is in constant overdrive all the time, thinking about what if I’d done this, what if I’d done that, but it’s pointless because I didn’t have any symptoms to report or question and half the bloody scenarios I’m imagining myself in – aren’t even mine! It’s ridiculous. All of the milestones weigh heavy on my mind all the time. Because of them, I’ve also somehow managed to create lots of psychological barriers for the future too. I don’t know why, maybe it’s because of their importance, but until all these milestones have been met, there is a solid brick wall in my mind which forbids any forward planning. I can think about the future of course and plan various scenarios, but what I can’t do is make a decision on anything, because any actions I do make are dependent on the outcomes of each milestone.

Each milestone has brought with it different stages of anxiety and overthinking too. The first was the blood tests and swabs taken at her birth; what if they came back with a virus that passed through the placenta? What if they came back with an infection? What if they came back with a deficiency of some sort? Fortunately they all came back normal, I hadn’t passed on any viral or bacterial infections to Beatrice, neither was I deficient in anything. I think it’s important to realise that none of these situations had ever actually been mentioned as a risk to me, but you just feel so desperate and lost you conjure up all kinds of worst case scenarios (from an already worst case scenario) in your mind. The second obsession was when will she come back to hospital after her post-mortem? How long will we get to see her? What will she look like? Will all her things be with her? How long will we get to spend with her? Can we hold her? Should we talk to her? Can we take photos? Should we take photos? What will the room look like? As if the appearance of the bloody room even matters! Every little tiny detail gets scrutinised, pulled apart and a thousand different scenarios and eventualities are created in your mind.

Then we had the stress and anxiety of the funeral to plan. And after this more blood tests to look for clotting disorders and auto-immune disorders. And so it all started again. What if I’ve got a clotting disorder? It does always take a long time for me to donate blood. What if I didn’t drink enough water to thin my blood? Does my blood seem thick if I get a cut? I can’t remember, that’s bad, why don’t I pay more attention to things?

You wouldn’t think I had a biomedical degree, worked in the NHS and had any common sense at all would you from reading the above statements? I’ve completely lost the ability to think rationally and sensibly when it comes to my pregnancy with Beatrice. It also sometimes feels like because something bad has happened to us, something bad will happen again. Of course this isn’t true and it doesn’t make sense to think this, but this is how it can feel. I do try and rationalise my thoughts and tell myself to stop being an idiot, but then I can’t help thinking – but what if that is the reason? And then it all starts again.

The big one though is waiting on the post-mortem results. This is where your mind can really go to town on imagining all the different reasons your baby might have died. I’m not going to write all the different eventualities I considered, but I can confirm that I considered every possible scenario multiple times until I received the actual results. Typically you attend a consultant led appointment, or a tear drop appointment as I’ve found out it’s called, to discuss the results (which we did last week), but we were also able to receive our results over the phone from our midwife back in December.

So what did the post-mortem report say? Well as we opted for a full post-mortem, the results paper said everything (12 detailed pages of everything) and nothing. As we were told right at the beginning, we may never find out why Beatrice died and we now know we won’t. What we do know is that the pathologists have put her age at 19-20 weeks gestation. This means she died shortly after the 20 week scan, from an acute event. This means something happened for her to suddenly die, that it wasn’t something that happened over a longer period of time. We don’t know what that something was, but we do know that it wasn’t because of a trauma, genetic condition, infection, clotting disorder, auto-immune disorder, deficiency, cord entanglement or early labour. To me this is both heart-breaking and relieving at the same time. Heart-breaking because our daughter has still died and we just don’t know why, but relieving because I can stop worrying about any of these reasons being the cause of death and also because if she died at 20 weeks then there really was nothing more that I could have done in the weeks before to save her. This might sound like an awful thing to say and I don’t mean at all that I’m relieved I couldn’t help my daughter, what I mean is that I can stop analysing every single detail of the week before her birth looking for a symptom that wasn’t there. I can stop trying to pinpoint a moment when she might have still been alive and therefore might have survived with intervention (again, even though I’ve been told there would be no intervention at this point you just cannot stop your mind from conjuring up impossible scenarios). Knowing that she died at around 20 weeks means that I can stop looking for a reason to blame myself for not trying harder, because we really did do everything by the book during my pregnancy with Beatrice.

How did I not know she had died? I don’t know, I really don’t know, I didn’t feel any different at all. I had no signs of illness, I didn’t feel run down or low on energy. I just didn’t know. One possible reason I’ve been given is that pregnancy hormones are very strong and so they could have masked what was really going on. Pregnancy hormones also stay in your body for a long time too. I’ve discussed with the midwife the possibility of the pregnancy termination drug kicking in earlier than it should have because maybe my pregnancy levels were starting to lower. Again we’ll never know, and in the grand scheme of things, it’s not important.

I do feel strange now though, because on one hand it’s good to have finally reached that last milestone in the pathway. But on the other hand it’s not really the last milestone at all. There is no closure that has been brought, because Beatrice still isn’t here with us. Instead it feels more like we’ve completed one chapter of a book, but still with lots of chapters left to read. We’ve still got a long journey ahead of us before we reach our end, I’m not even sure what the end will be, but at least we have some of the answers we need to start moving forward and Beatrice will be coming with us.

img-20190122-wa0006.jpg

Lauren  star

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s