Pregnancy After Loss (PAL) - Milestones, Comparisons and Choiceless Choices

35+3 today, the c-section is booked for the 10th August, less than 4 weeks to go. Comparing this pregnancy to Herb’s is difficult to look past. Comparison is a natural, human thing we do, subconsciously, consciously in many different ways. At 34+5 we discovered a problem with Herbie’s brain at a routine appointment with our obstetrician. So, naturally I’ve been stressing out that something would go wrong now.  

Something, however, I will always be grateful for is the ability for us to have private healthcare. We did with Claude, I almost didn’t with Herb but thought “we can afford it, so why not, eh?”. Had we not had private health and see him at every appointment we would have most likely given birth and our world would have come crashing down as soon as he came out. Would the damage in his brain mean he even was born alive? Most likely, but would the damage be noticeable straight away, probably.

I remember very vividly seeing the problem at our 34+5 appointment. Being somewhat familiar with the brain from my psychology studies, I could see the ventricles were enlarged. In the end it was nothing in comparison to what we would see the final time we saw his brain minutes before the feticide. Our specialist obstetrician in Hobart offered for us to see his brain just before she did the procedure. I absolutely wanted to see – and my goodness was it a mess. Think of it as an aerial view of the brain with the front of the brain at the top of the screen and the back at the bottom, the best way I can describe it is the picture looked almost like a skull. His ventricles at the front had enlarged so much they looked like eye sockets, the lateral part of the ventricles towards the back had enlarged and almost joined up so it looked like a large gaping mouth. There was not much space for the brain matter, you couldn’t really see the folds of the brain, there were dots of calcification and the lining had thinned. All of this was catastrophic.

The damage the parasite had caused was significant in about 2 weeks between scans (34+5 to 36+6), the specialists were amazed at what it had done. It can be assumed I’d contracted it sometime around the 24-28 week mark, as it takes about a month to really bed itself in to the system and to then begin to cross the placenta, once in the placenta it would have taken some time to begin to cause damage too. The rapid speed of damage in the end just indicated it had been a particularly strong parasite that had taken over the body.

Had we been in the public system there’d have been no cause for concern at that point, he was still moving, heartbeat was strong. But, lately I’ve been looking back wondering if I missed a sign. His movements were very spasmodic, possibly a sign he was having seizures in there, and a day or two before the birth I felt as though perhaps he had stopped using his legs. But, I also wasn’t sure if I was just making that up in my mind.

Either way, I am grateful we were given the opportunity to make a choice. But it was and is a choiceless choice. Despite what pro-lifers, anti-abortion people may think, this is not just a compatibility with life, this is a quality of life debate as well. Why would we have brought a child in to this world to a life of pain, discomfort, most likely never having the ability to walk, talk, probably even swallow. A life of severe muscle aches and spasms, he’d have probably been born blind.

And the alternative for us if we didn’t terminate or weren’t approved to terminate…neo-natal palliative care; keep them as comfortable as possible but deny certain treatments until they die on their own. This concept to me was unthinkable, horrific and something I could barely process when I asked “what would happen if the termination was denied by the independent panel” (which is made up of 3-4 people of at least one other doctor as well as a psychologist, gynaecologist or medical expert). Our lives would have instantly changed the moment he was born alive had we not known the brain damage. It would be a life probably lived in hospital just waiting for the inevitable. Claude’s life would have changed instantly, as would ours.

But most importantly is the life Herb would have lived. And it’s not one I would ever have allowed him to experience once I had this knowledge. I’ve spoken once before in a socials post; I even considered throwing myself down stairs or stepping in front of a bus if I was denied the termination. Because I couldn’t bear to let him live a live of discomfort and pain, even for a second. I was listening to a TFMR podcast the other day and had to stop. The interviewee was talking about how a nurse had thanked her for what she was doing, and I had forgotten that both our obstetrician and neo-natal paediatrician said the same thing. They thanked us for what we were doing, they see the other end, the pain and turmoil for the children and the families. It was a strange thing to be validated for but it was incredibly comforting at the time. And still is to this day.

I also hoped that perhaps he’d just go on his own in there, the damage too severe he wouldn’t have survived until the birth so I didn’t have to go through the procedure to force his heart to stop. It’s an awful, awful feeling to wish for that, but one a TFMR mum will most likely have felt in their journey.

So, a long winded explanation to explain the feelings of this scan. My trauma brain told me that something would be wrong, they’d find an issue. The voice in my head would say things like – as if you were going to get this baby, you did something wrong last time, what made you think you got it right this time? Those sorts of really fucked up things have been running through my head in the lead up. Anyway, all is fine. The baby wasn’t in the best spot to see the ventricles but our obstetrician could see enough and the fact she couldn’t see any abnormality is a really good sign. We could instantly see the difference in the brain, we could see the brain folds (the creases in the brain) which are critical to development, in fact the more wrinkled a brain is the higher the cognitive intelligence in some. It really confirmed to us the damage to Herb’s.

This was a line in the sand for me, the allowance to finally accept this is really happening. I’m going to have a healthy, breathing baby. We are having our third child who will get to join our family earthside, who we get to watch grow and become the person they’re going to be. There’s still a tinge of knowing that things can go wrong in the last few weeks and a healthy baby is still not a given, not until they’re finally in your arms. The cruelty of entering this club you never want to be a part of, but once you are there’s comfort in other’s stories, but there’s also the horrific realisation of now being exposed to a plethora of things that can go wrong, it’s not just your own story you begin to run through in your mind.

After the appointment I went home, James went off to work, Claude was with me as it’s school holidays. We’d just returned from a quick (and my last) work trip to Hobart so I was exhausted physically and emotionally. I expected to feel somewhat relieved and happy, and whilst I did just a smidge, I was overwhelmingly sad. Sad that what happened to Herb, happened. Sad that he never got to join us, to experience a ‘normal’ life, to feel love and be loved. I also feel like we’re leaving him behind a little. I hate saying moving on, I don’t think anyone ever moves on from grief and loss, you can move forward, because moving forward means you can take them with you. And whilst we are, it still feels as though we’re leaving him behind a bit.

I find writing letters to him immensely useful in my healing and ability to connect with him. I have done so since the moment we got home from hospital after giving birth to him. So I wrote to him the other night about how much I hate how this one will soon be older than he ever will be, I hate that he isn’t here, I hate that my body couldn’t protect him, I hate that I contracted this stupid parasite and I don’t know how or why, I hate that his brother doesn’t get to touch, see or love him in the flesh, I hate that his Dad doesn’t get to kiss his beautiful face or stroke that wonderful head of hair or teach him all the naughty things he’s taught Claude.

So…I’m still taking it all a day at a time. Whilst I’m grateful, relieved, and excited, they’re probably at the bottom of the list of feelings. If I really had to rank how I’m feeling it probably looks like this:

1.     Nervous

2.     Anxious

3.     Traumatised

4.     Sad

5.     Emotional

6.     Exhausted

7.     Uncomfortable

8.     Grateful

9.     Other

10.  Emotions

11.  I

12.  Can’t

13.  Quite

14.  Articulate

15.  Then finally, excited.

16.  Oh, and happy – but happy comes with guilt…sooooo that’s a bit fucked, eh.

Thanks for reading, your messages and comments. Almost there. I hope other loss Mum’s and PAL Mum’s are feeling a little bit of comfort that your thoughts are normal, warranted, validated and real.