Recently, I spoke at a Pregnancy after Loss Study Day at the Royal Berkshire Hospital, in Reading.
This is what I shared with them.
Introduction to Leo and Eli
I’d like to just set the scene of why I am here today, and introduce you to my first son. I fell pregnant with Leo in May 2016, after three cycles of IUI and two cycles of fresh IVF. It was textbook, until it wasn’t. I woke up one morning, two days after our 36 week scan, to no movement. I did all the things they tell you do, I laid on my side, and out flat which always got him going, but nothing. I found his feet, pressed against them, but nothing. It was that moment that I knew.
We phoned the Maternity Assessment Unit, they invited us in, but he was already gone. He was full term plus one day. He was ‘cooked’ and ready. Except he had died. And life, in a split second, changed course. Leo Phoenix, was born three days later in Room 16 of the Delivery Suite of the John Radcliffe Hospital in Oxford, on the 17 January 2016, at 2:33am, he weighed 6lb 43/4oz, had a head full of dark hair and he was and will always be our first son, and the little boy who made us parents. As I like to describe him, he’s our little lion, with a mighty, mighty roar. He has a big story, and its up to us to tell it.
We went on, five months later to have an early miscarriage at 6 weeks after a round of frozen embryo replacement, and then four months after this, I fell pregnant again with our last frozen embryo from Leo’s cycle – and it is this pregnancy that I’d like to talk to you about today.
Eli’s pregnancy had a vast team involved – a team we crafted mostly ourselves out of necessity. The list of involvement exhausts me. It included, the Oxford Fertility Unit for early scans, Reading Lifeline for counselling and support groups throughout, Fetal Medicine Consultant monthly scans from 16 weeks, Tommy’s Rainbow Clinic from 17 weeks, Community Midwife Team, Bereavement Midwife, Maternity Assessment Unit, Perinatal Mental Health, Consultant Midwife, Day Assessment Unit for weekly CTGs from 28 weeks, Health Visitor, Antenatal Admission from 35 weeks, twice daily CTGs, Induction at 36+1, High Dependency Unit for 3 days, Postnatal Admission for a further 4.
Mindset after Loss
From my perspective, in order to appropriately care for families during a pregnancy after loss, it is essential to understand the mindset – the mindset of a bereaved parent who has gone through trauma. This isn’t a ‘normal’ pregnancy. And whilst, yes, it can be argued that all pregnancies have their own level of complexities in the care that is needed, pregnancy after loss is something that is rarely understood adequately. The trauma never leaves, so neither does the need to be cared for compassionately, with true understanding.
I’d like you to think about the two words you’d want most families that you look after to use to describe their pregnancies.
I asked people I know who had been through pregnancy after miscarriage, stillbirth and neonatal death, what two words they would use to describe that pregnancy.
This is what they shared with me.
Gut Wrenching. Terrifying and Emotional. Painfully Isolating. Lasts Forever. Constant Worry. Relentless and Shit. Emotionally Draining. Intense and Lonely. Heart Wrenching. Emotional Rollercoaster. Cautiously Optimistic. Hopeful Anxiety. Bloody Horrendous.
These aren’t words that we would normally associate with pregnancy. It isn’t what is sold to us, and it isn’t really welcomed socially either, which tends to isolate you even more. Pregnancy after loss for me was the extreme of the most extremes. I would describe it as placing yourself at the epicentre of trauma, your own trauma, and staying there 24/7, for nine months – there are no breaks, no respite, no times to breathe deeply. You are there, right in the centre of it, when you are awake, and when you are asleep. It is exhausting, relentless, terrifying yet full of this quiet hope that sits in the background, and slowly, very slowly pushes you forward.
The bereaved and traumatised mind is incredibly black and white when it comes to the fragility of life. The moment the mind allows itself to think that something is wrong, no matter how small, the mind tells you that your baby is dead. There is no in-between, and there is rarely any catching yourself before you fall, powerless to this mindset. A mindset that you hate, that you try to resist, that takes control without warning, and without permission.
It is understanding this that is key. This isn’t just anxiety. This is the inability to see fact from fiction. It’s an inability to recognise instinct from anxiousness. Its an inability to separate grief from trauma. Its an inability to believe you just felt them kick. No matter how hard those kicks are. Its an inability to see the difference between the future and the past. Its an inability to press pause on the replay of what has happened, in order to press play on the good that could happen.
Reassurance is fragile. It is so delicate, that it will mostly break far quicker that we’d like, and probably far quicker than you’d expect. A scan or a listen in can settle the mind for a few days at most, but probably a few hours at norm. The soundtrack to loss plays on a loop, just some days it’s quieter, but most days it’s deafening. It even filters into your dreams. 24/7, for 9 months.
The problem is, none of this really stops when they are born screaming either.
The Mindset in Action
During my pregnancy with Eli, I would have many visits to the Maternity Assessment Unit, either for anxiety, reduced movements or both. I began to realise, it didn’t matter what led me there, the important thing was that I went. When I was anxious however, I could quite easily convince myself that he was dead or dying, despite feeling him kick. Once you have fallen into that pit, not much drags you out again – including the biggest kicks, until someone tells you that they are alive, and most importantly, well.
It is when you are being cared for by people who don’t know you, that I find the mindset is most misunderstood. Ticking the boxes of an MAU visit for the midwife is ‘urine sample, weight, blood pressure, chit chat, history, and then, heartbeat’. All the while, I think my baby is dead. The heartbeat has to come first.
At visits to the Day Assessment Unit or during admission, we had many CTGs. Often, he’d meet criteria in 10 or 15 minutes, and I’d be asked to get up and leave. Yet, your mindset is PAL doesn’t really care about the medical criteria, and ticking the box. It helps, yes, but what is needed is to reach a point where we have met our own criteria. Some times this could be a full hour, before I felt safe to leave, sitting on a tightrope of anxiousness – am I about to watch my baby die on the CTG? Or will he die as soon as I get up?
It’s important to recognise that despite the world telling me ‘I wont relax, until he is safe in my arms’, it takes much longer than that. Shortly after Eli’s one hour obs, he was taken away from me to HDU, with my wife. He had been born, I had instantly lost my status of ‘bereaved parent, tread carefully’. He was taken away, and I was left. No-one told me what was going on. I was handed some toast, and pointed in the direction of the shower. In those moments, all my mind allowed me to consider was, either he was dying or dead already, and I’d most like die in the shower on my own too. Because that’s the way the world seemed to be treating us, and thats the way trauma allows your mind to think.
So please remember, when dealing with families who have previously experienced such devastating and traumatic losses, their mindset can be dark, it can be filled with the most intense fear, and it can appear deeply irrational to you, but it is perfectly rational to us. We have lived it once, we imagine living it twice every day.
You can read more about my Pregnancy After Loss, here.