This week, I attended the NHS England Better Births Three Years On Event and share Leo and Eli’s story. The event saw the annual review of the 2016 Better Births paper, aimed at improving maternity services in England. Over 500 people were in attendance across maternity, obstetric, neonatal and other related services together with families and charities. I was invited along to speak in the Safety workshop, to share what made us feel safe (or not) in regards to Leo and Eli’s pregnancy and births. I have spoken about similar topics here.
This is what I shared at the event: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 2015, after three cycles of IUI and two cycles of fresh IVF. IVF saw us placed on a high risk care pathway, with additional scans at 28, 32 and 36 weeks. Yet, despite this, his pregnancy was, I’d describe, as textbook. 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 to 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 in that moment that I knew. We phoned the Maternity Assessment Unit at the John Radcliffe Hospital. 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, 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.
Leo’s birth, despite it all, was positive. The days leading up to it were full of the most intense fear, unknown questions and pure shock. But once we stepped into our delivery suite, me and my wife focused on meeting our son. We laughed, we danced, we joked. We were well supported by our midwives, including a student, who all answered our questions openly and as honestly as they could. They viewed Leo’s birth as no different. I had an intense induction with a half failing epidural – but we can actually look back on it with smiles and positivity. Because, despite his death, those moments were and still are more about his birth. The grief that bookends those hours are different. But his birth, was just that, it was his birth.
We went on five months later to have an early miscarriage at 6 weeks and then four months after this, I fell pregnant again with our last frozen embryo from Leo’s cycle – it is during this pregnancy that I learnt so much about the impact of loss on our mindsets and the need for responsive maternity care.
One of the main lessons that I talk about is : In order to appropriately care for families following a loss, it is essential to understand the mindset – the mindset of a bereaved parent who has gone through trauma.
Leo’s death, birth and the trauma that surrounded it all really shaped my approach to a subsequent pregnancy. I wanted a c-section. I wanted to be able to exercise some control over his birth. I wanted to know who was going to be there, I wanted to trust in them. I wanted to know that they knew our situation. I wanted absolute minimal risk. I didn’t want an aim for minimal intervention – that made me feel unsafe. I wanted Leo’s issues reflected in our care, but to also have any other risk factors addressed with the same level of importance. I wanted continuity, I wanted specialists. I did not want to enter rooms that I was in with Leo. I wanted monitoring regularly, and throughout birth, I wanted honest, frank conversations. I wanted prompt action when needed. I wanted to not fall into the cracks, or be failed by inhumane systems. I wanted clarity and consistency in the things that were told to me. For me – these are the things the represented safe care.
A huge challenge for us when renavigating maternity services was learning to trust in the health care professionals and the hospital again. Whilst Leo’s death wasn’t a direct result of any one person’s doing or not doing – we still left that hospital with a memory box, and not our baby. It was a regular battle to know if we were satisfied – should we question this more? Should we be asking for another opinion? Do they understand our history? It all exacerbates the persistent underlying anxiety that exists in a pregnancy after loss.
Anxiety is the single most exhausting aspect. It is a constant uphill battle. A battle because the bereaved and traumatized 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, the mind tells you that your baby is dead. Logic doesn’t really fit in with this mindset. This is why it is absolutely vital that trust exists, that information given is always clear and always consistent, and that people take the time to really, truly listen to the needs of the individual family.
For me, it is people understanding this that is essential in delivering safe care. This isn’t just anxiety – it goes beyond anxiety. Managing those moments of panic with control, by checking the heartbeat first, and giving families the time they need is so important. Equally, utilizing that time to identify other needs is really key for safe, well considered care – it can be too easy for people to excuse away symptoms with heightened anxiety.
I referred ourselves to the Tommy’s funded Rainbow Clinic at St Mary’s Hospital, Manchester in order to have a review of Leo’s postmortem. I needed to ensure that no stone was left unturned and unfortunately I wasn’t satisfied with my consultants review.
We were told that ‘some babies just die’ and ‘some survive with a small placenta, so it isn’t necessarily a factor in his death’ and in terms of ongoing care that ‘she wouldn’t do anything different’. This complacency wasn’t good enough for me. It shouldn’t be good enough for anyone. There was no fight, no determination to better the picture for us, or for others. You see, babies dying isn’t just one of those things. Hospitals are showing that they can reduce deaths. Professor Heazell’s team showed me that we could make very educated assumptions as to why Leo died, and most importantly, we could do something about it in a subsequent pregnancy. Whilst my hospital told me ‘the placenta couldn’t be measured’ – they told me it could. This knowledge was a huge game changer in enabling us (and many other families) to embark on another pregnancy – we now knew we would have medical support that we could trust.
This shouldn’t be a postcode lottery or just available post-loss. I passionately believe that if we had known that Leo’s placenta was small, other presumed normal but noticeable flags, such as slowed growth, would have been taken more seriously. I don’t know if it would have saved him, but it may have given him a chance. I describe Leo as too polite – guidelines favoured the 9 in 10 babies. Leo’s politeness meant guidelines didn’t favour him, he wasn’t struggling enough; he was the 1 in 10. Whilst I value the importance and science behind medical guidelines – there is surely always a place to look beyond them, not with them.
We travelled from Oxford to Manchester for three scans in Eli’s pregnancy. What stood out to us was that Prof Heazell and Louise Stephens, the Specialist Midwife, held the appointments together. They were both able to gain the knowledge from us whilst utilizing their individual skill sets to care for us in unison.
There aren’t many people who can perform an ultrasound whilst also discussing the current state of stillbirths in the UK. But it is this ease around the topic that allows the team to fully tackle it. There is no nervousness over our history, there is no complacency, they are looking for risks and able to explain them to you, they provide continuity of care, and deliver high standards of individualized care with a deep, deep understanding of the anxieties and stressors involved.
Alongside being treated by our excellent Fetal Medicine Consultant, Brenda Kelly at the John Radcliffe, and the Rainbow Clinic team, we also were supported by what was then, Reading Lifeline’s Pregnancy After Loss Antenatal Support Group led by our counsellor and a practising Bereavement Midwife. It ensured that our emotional support was supplemented with antenatal education reflective of our own specific loss – it was again a game changer in being able to build trust with the information given, and helped to empower our minds and voices in this journey.
That Bereavement Midwife, Juliette Ward, has now gone on to set up the Rainbow Clinic at the Royal Berkshire hospital. To give families a local, direct, singular point of contact during a pregnancy after loss will not just emotionally support them, but medically ensure that they receive safe, continuous and bespoke care. Whilst I don’t think a pregnancy after loss can ever be made easy, it can certainly be made easier with services such as this.
And this level of care needs to continue during and after birth also. Eli’s birth was quick and intense. My 36 week induction started at 4pm; he was born at 11pm. On the most part, I felt supported with my concerns being listened to. We’d worked for weeks to address my non-existent appetite for risk; it really was a team effort. Yet, all that care and consideration stopped for me the moment he came out alive. No-one considered how I would be feeling the hour later when he was taken away from me, into High Dependency, and I was left alone to shower and eat toast, with not one update. No-one considered that in that moment, I thought he was dying. No-one considered that my mind was still black and white to the fragility of life; that I thought he was dead, and I would die too, in the shower, alone.
The shift from never believing that they’d make it to having a screaming baby is seconds. The moment of preparation is minuscule – therefore pregnancy after loss care cannot just stop. Postnatally, we still need care. The weight of responsibility may now be shared, but it is still hefty. We are still bereaved and traumatised, despite new life.
I spent my pregnancy after loss working to reestablish trust in the maternity services. Yet; in those moments after, all of that trust was lost, yet again. Should we ever embark on another pregnancy after loss – I’m not sure how trusting I would be. And when you are at your most vulnerable, trust in those caring for you is the single most important thing.
Next time you are caring for a family during or after loss, go gentle with them. And should you wish to understand their needs more, I host a weekly twitter chat for all those invested in or affected by baby loss, every Tuesday at 8pm called #BabyLossHour. Please, do come along.