There are a great many narratives of baby loss. Each one is unique of course, but they all share common features: shock, despair, anger, guilt, shame. The feeling that life as you know it has, without warning, shattered all around you; your world changed forever.
Part of navigating life after loss is finding a way to tell your story. You discover the language which best reflects your reality; decide which details to share and which to keep for yourself; and, in time, your motherhood becomes part of the patchwork of your identity. It’s painful, but you learn how to own it.
But what happens when there’s a part of your story which, no matter how hard you try, you cannot find the words for? What happens when there’s a piece of it which you are unable to tell; out of fear, perhaps, or guilt? Or simply because, whenever you try, the words can’t come?
I’ve shared Findlay’s story many times, and have often spoken about the cause of his death. A routine scan raised some concerns over his heart, so we went to Great Ormond Street Hospital to see a fetal cardiologist for further investigations. Once there, Findlay was diagnosed with hypoplastic left heart syndrome (HLHS), a complex and rare congenital heart condition in which the left side of the heart is severely underdeveloped. We were told that, essentially, our baby only had half a heart.
There is no cure for HLHS: it cannot be corrected, and the heart can never function normally. We were told that once our baby was born, and no longer receiving oxygenated blood from the placenta, he would become breathless and die.
The prospect of carrying my baby for another four months, going through full term labour, and then watching him die, was utterly horrifying. The consultant gave us an alternative option: we could stop the pregnancy now, and our baby would be delivered stillborn. Both seemed agonising. The very idea of ending our much-wanted pregnancy almost as devastating as watching our loved and longed-for baby die. I couldn’t believe that this was happening; that this nightmare was ours
What I’ve never spoken about, the part of our story which I have omitted before now, is that we were also given a third option.
Although HLHS is incurable, there are a series of palliative surgeries which, if carried out in the first few months of life, can improve the heart’s function. They are high risk, the survival rate variable, and the long-term outcomes currently unknown. The doctor told us that given the severity of our baby’s condition, he may not even be eligible for surgery.
What should have been a lifeline, a ray of hope, felt like a side note; presented to us with the positivity and enthusiasm of an insurance broker running through the terms and conditions. My baby had a right to live – a right to fight – yet the doctors and nurses spoke as if he was already gone.
Over the next few weeks we talked to endless professionals hoping to find answers to our questions; begging them to relieve us of our responsibility – to make the decision for us; all the while dreading that they would say the one thing we didn’t want to hear. Everything, from the grave tone to the looks of pity which painted the faces of those we spoke to, made it clear that – to their minds – there was only one choice.
We were told, over and over, that there would be suffering: we needed to decide if it would be ours or our baby’s. And so, on Monday 6thJuly 2015, after a 26-hour labour, our firstborn son Findlay Eric silently entered the world. He had my nose, and long, slender feet. He was tiny, but utterly perfect. The most beautiful little person I had ever seen.
Much of the hesitation behind sharing the whole story of Findlay’s death, stems from the overwhelming fear that we would be judged: that people would think we chose for our son to die. And, perhaps even worse, that they would think of it as a choice which we made because we didn’t love our baby. As if, somehow, it was best for us that he died; that because he wasn’t ‘perfect’ we didn’t want him.
Part of the problem is that the language surrounding the death of a baby following an antenatal diagnosis is so loaded. Phrases like ‘termination for medical reasons’ (TFMR) and ‘interruption of pregnancy’ make what is a time of extreme heartache and trauma sound medicalised and objective; the words are so cold and heartless.
More recently, I’ve come across the term ‘compassionate induction’ which is less clinical; but even then, it’s hard to shake the unnerving sense of responsibility, or at least compliance, which is implied. And that’s not something which sits easy with a grieving heart.
Even within the already shrouded world of baby loss, TFMR feels like the murky underbelly. The taboo within the taboo. Once I discovered and immersed myself in the incredible online community of baby loss survivors, those reaching out to others and sharing their stories, I was frightened that telling my truth would lead to rejection – that I’d be thrown out in the cold. I feared that my grief may be worth less, more heavily laden with shame and guilt, than that of a mother whose baby dies in other circumstances.
But the truth is, no parent chooses for their baby to die.
They don’t choose to be in a room where a doctor is telling them their baby has a life-threatening illness. They don’t choose to have their vision of a perfect family snatched away and replaced by fear, uncertainty, or a life they wouldn’t want for their child. The don’t choose to be faced with signing a document agreeing to end their baby’s life.
Yes, we were forced to make a decision; but that decision couldn’t have been further from what I wanted. What I wanted, more than anything in the whole world, was my baby.
I wanted to hold him in my arms; to feel the rise and fall of his chest against mine; to see the edges of his mouth turn up in a smile as I sang to him. I wanted so desperately to look into his eyes and get lost in their pigments. I wanted to hear the soft, bubbling snuffles of his sleep as he lay beside me. I wanted to feel the warmth of his skin as his tiny fingers curled around mine.
I wanted these things so badly that my heart physically ached for them. At times the longing was so great that it suffocated me. But I knew that there was only one way that I could have them; and that meant not being the only one whose heart was hurting.
Findlay taught me many things; but first and foremost, he taught me what it means to be a mother. He taught me to love with a strength and ferocity which knows no bounds; which cannot be weakened by time or distance; which would have you face your darkest days a hundred times over, just to feel its warmth for a moment.
He taught me that motherhood makes you weaker and stronger all at once; terrified and fearless in the face of tragedy; broken and more whole than you ever thought possible.
He taught me that being a mother means putting the wants and needs of someone else first. It means protecting your child, by whatever means necessary; sacrificing your own happiness to save them from hurt. I carry the pain of a broken heart every single day. I carry it so that my son didn’t have to.
I’ll never know the colour of his eyes, or the sound of his footsteps running along the hall. I’ll never feel his breath against my cheek, or hear him call my name. But I do know that Findlay never felt pain. He never awoke in a strange room, surrounded by noises he didn’t understand, frightened or alone. He never felt confused, or helpless, or let down by the limitations of a body he didn’t ask for. He never suffered, not even for a moment.
All Findlay ever knew was love.
And of all the things a mother wants for her child, what more is there than this?