When Orla died, I became aware of this quote that has been associated with Ronald Reagan who himself lost a child:
“When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them.”
As a lover of words, and as someone who devotes their life to finding ways to which to understand and describe things, this quote stuck with me. We have so many words in the English language and yet not one that captures what it is to be a bereaved parent. ‘Maybe it’s because it is so rare’ some may say. Yet it is not. There are thousands upon thousands of parents who are left questioning their identity in the wake of child loss. Who feel invisible to the rest of the world. And Nicole is someone who refuses to allow this to continue.
Nicole is the founder of Our Missing Peace, a charity that aims to spread awareness of pregnancy, baby and child loss and to help bereaved parents know that they are not alone. Through Nicole, I have become aware of the term Vilomah, which is Sanskrit for ‘against the natural order’. Because that is what baby and child loss is; it is against the natural order of life. Nicole is campaigning to make this word more widely used and to give all parents who have experienced loss a clear identity.
I will never forget the doctor who told me that Orla had died. I cannot bring her face to mind, bit when I saw her coming out of a hospital room some months later, I knew instantly who she was. I remember her gentle tentativeness, her hand touching my leg, the sound of ‘I’m so sorry’. I remember her administering the pessary to induce labour and her willingness to sit and talk through the procedure. She was young, probably quite early in her career. But she was kind. I can’t say the same for every person I came into contact with, and I know that so many parents have had very varied experiences. However, I am grateful to have had someone who was able to show compassion at the time that I needed it most.
As someone who provides consultation and supervision to a range of professionals, I know full well how little emotional support is available to many medical staff. But reading This is Going to Hurt (Adam Kay’s book) sucker punched me with it even more. Every single day, the staff that we so value in the NHS are dealing with life and death. New life and death. Death before life begins. And yet they are often given little space to process or debrief. Continue Reading
When we announced our pregnancy after Orla’s death, the relief from others was palpable – a sense that there was going to be a happy ending. The rainbow after the storm. Yet nine months is a long time to live in terror, knowing that you can reach the final hurdle and still come home empty handed. Pregnancy after loss is an incredibly complex and fraught time; saturated with intense fear, renewed grief and other overwhelming emotions, each day can feel like an endurance task. Having someone else to carry some of this is essential. Priceless even.
In this letter, Jess captures her gratitude for the support their doctor gave them during their rainbow pregnancy. This is what person centred care is all about.
Jess is mum to Leo and Eli and works tirelessly to support bereaved parents, as well as fundraising and campaigning to raise awareness of baby loss with the hope of saving more babies lives. Jess can be found here and on Instagram @thelegacyofleo and she hosts a weekly #BabyLossHour twitter chat every Tuesday at 8pm.
To the doctor who held my fear during my pregnancy after stillbirth,
I didn’t recognise. We met you, properly for the first time, a few months after my son died to discuss what had happened. But I didn’t recognise you. I didn’t recognise you from that day – that moment when I discovered that he had died. Died, in the moments when we had been anticipating his arrival the most. One day, past full term. You were there, just to confirm that our life as we knew it then, had ended. That his life, in its entirety, had ended. That his tiny, beating heart that was once just a small flicker on a screen, was now still, silent, non-beating.
I have spoken many times about the support I was incredibly privileged to receive from our midwife Michelle. Her unwavering commitment to us through Orla’s pregnancy and birth, our fraught and anxiety ridden journey through pregnancy after loss and the hugely reparative birth of Esme was incredible and we will be forever grateful. Throughout this time, I did wonder about the impact that this had on her; did she lose sleep too, wondering if our baby would make it into our arms safely? Was she counting down the days until our planned early induction? Was it actually her who breathed the biggest sign of relief when our baby came out screaming?
As a healthcare professional myself, I know first-hand how there are times when you can’t help but take your work home with you. When you wake in the middle of the night with a particular client on your mind. When you desperately await their call so that you can reassure yourself that they are okay. But it wasn’t until I head Michelle speak at a workshop for midwives that the true emotional impact of the work of loss and bereavement really hit home. Maybe it was only then that I could even allow myself to go there and recognise it before then, but it really floored me. We are all in this together and it is important that everyone who comes into contact with loss is cared for, because this is the only way in which to create sustainable and compassionate systems in which to practice.
Baby Loss Awareness Week aims to raise awareness about the key issues affecting those who have experienced pregnancy loss or baby death in the UK. For some, this may be educating about the long-term impact of grief, or helping others to know what to say and do if they know someone who has lost a baby. But it is also about helping to educate and empower people so that fewer babies die: sharing research and practices that we know can reduce risks.
Yet sometimes it can be hard to hear these things. As someone who has lost a baby, hearing of new (or old) research can be painful and trigger intense feelings of guilt and shame. And on the flipside, hearing of people who disagree with such findings can lead to all sorts of complex emotions. Of course, everyone is entitled to their own opinions – but as someone who has lost a baby, and who knows that it can and does happen more than it needs to, it can feel like a kick in the teeth.
Farrah lost her son from Sudden Infant Death Syndrome (SIDS) and in this powerful letter, she wants to let others know the impact of not following safe sleep advice can have. This isn’t about debating what the evidence does or does not say; it is about the impact that loss from SIDS can have.