How I made a decision for my son at the ‘cusp of life’

When I was admitted to hospital in labour at exactly 23 weeks in November 2011, I was shocked to hear the official line stated by doctors: they would not actively encourage resuscitation of babies born before 24 weeks of completed gestation.

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The reason, they said, was because of the burden of suffering for those babies was often far greater than their hope of attaining an acceptable quality of life.

Like the people reading ‘miracle’ magazine stories, I’d somehow internalised a perception that although having a premature baby could be stressful, risky and meant a long stay in hospital, it would all somehow work out in the end. 

During the crucial conversation about the potential outcomes of resuscitation and intensive intervention with a senior neonatologist I’d never met before – which would change the course of our lives, and decide the fate of our son’s – I could barely hear myself think.

Nor could I really feel anything except for the blood rushing frantically through my head and the adrenaline causing my whole body to violently shake.

The birthing suite, in the midst of painful contractions, surrounded by concerned faces but somehow still so terribly, terribly alone, is not a place you want to find yourself.

Not when you’re trying to understand mathematical odds like a measured and methodical gambler – let alone trying to ascertain your core beliefs about what kind or quality of life you believe is worth living. But there we were being asked to formalise what was at that time still quite hypothetical decisions about whether to resuscitate our baby should they be unable to stall my contractions and he be born that day. 

Every parent’s instinct is to fight for the life of their child – and there’s no doubt it was ours, too.

But we somehow had to find the ability to ask ourselves one big question we felt very ill-equipped and unwilling to answer: at what price – to Max, and to us – is life?

There were no doctors, no intimidating equipment, bright lights or loud noises. Max was delivered into our arms by our beautiful midwife lovingly, carefully, but silently except for the one big breath he tried to take – more of a gasp, really – the sound of which I don’t believe will ever leave me.

At that moment, unable to imagine a life with a severely disabled child, and with little certainty as to what kinds of supports, interventions and treatments might be available to ease his suffering should this be his fate, we somehow found the words to tell the neonatologist.

We wanted to choose the path that our gut told us would prevent suffering to his tiny little body. 

I recall very little of that conversation except that I felt strangely detached from it, as if I were watching it play out with actors on a stage. I obviously appeared much more rational and measured than I really was because the doctors took our words away with them as evidence of our true wishes and didn’t raise the issue again.

For me to say that we made a ‘decision’ in that instant not to resuscitate our baby, however, drastically misrepresents the immense strain and shock under which this life-changing and irreversible choice was made.

A decision implies that a person has rationally thought through the consequences of their act, looked at things from both sides of the equation and reached a consensus.

I’m not sure we did any of that. We had no time. We had little information. We didn’t understand. We were so scared. 

And so, when our baby boy was born just a few hours later no one intervened.

There were no doctors, no intimidating equipment, bright lights or loud noises. Max was delivered into our arms by our beautiful midwife lovingly, carefully, but silently except for the one big breath he tried to take – more of a gasp, really – the sound of which I don’t believe will ever leave me.

Max was warm, and safe and cradled in our arms for the whole of his life and we take immense comfort from the fact that he never knew suffering.

 

It was the most beautiful moment of my life as I marvelled at my darling baby boy’s sheer perfection and it took some hours for me to comprehend that he was dead, and for the crushing realisation to set in that he would now never have the chance to prove those grim statistics wrong. 

What I did not comprehend was how it would feel to watch Max die.

Or to have to leave him behind in the hospital the next day as we walked, shell-shocked, to our car, and back home where we would have to close the door to the bedroom we were in the midst of preparing for him and instead spend the afternoon making funeral arrangements. 

I believe that on the balance of probabilities given to us on the day Max was born, we did the right thing by our baby and for our family.

Max was warm, and safe and cradled in our arms for the whole of his life and we take immense comfort from the fact that he never knew suffering.

But I also think it is normal for doubts, like the ones I still experience intermittently, to surface in the face of stories that counter ours. 

‘Edge of Life’ will be hard to watch – but it is important that we do.

We must watch and hear the stories of babies and their families whose stories are complex and challenging in order to paint a more accurate, sensitive picture of the reality of what it is like to give birth to a baby at the very ‘cusp of life’.

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