Tuesday 18 January 2011

To Where You Are

Fly me up to where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile to know you’re there
A breath away’s not far
To where you are

To Where You Are - Josh Groban

Posted in memory of the babies who are not with the mummies and daddies and siblings today - born too small, too sick, too soon. 

This controversial post, is like many this week, sensitive. If you have lost a baby, please consider whether reading this is what you need, in this moment. If you do decide to read on, I urge you to visit this link first, particularly if you have been in the position of withdrawing treatment for your baby. 

I was watching a cookery programme over summer, and one of my favourite quotes from that programme was “just because we can do something, doesn’t mean we should”. Although it applied to some weird fusion culinary technique, this quote pertains very much to medical science as it does to cookery.

And sometimes, we forget, that behind science lie lives, in this case very tiny lives. Advances in science mean that babies who, like mine, 20 years ago, would have been left to pass away, can be saved. And that’s amazing. And I am grateful. Forever grateful.

But , of course, saving tiny lives is not without its risks. Very early babies can suffer from life limiting conditions and severe disabilities, but also, they can be fine, productive members of society. They can struggle with everything from breathing to consuming food, cognitive development and mobility. Or they can breeze through and have no problems. I am sure, that sat amongst the ventilator equipment, the computers, the arsenal of medications, every neonatologist has wished for the crystal ball, which babies can be saved and have a high quality of life, and which ones can’t.

Of course, the problem is that some later premature babies or even term babies can have very severe problems, and the same debate pertains to them but perhaps to a lesser degree, the choice being less obvious that for those babies born at the very edge of viability, however I do address the problem of withdrawing treatment later in this piece. 

Currently, for premature babies, the guidelines are as follows. If a baby is born at 24 weeks or beyond, then every effort is made to give those babies what they need to survive and thrive.

If a baby is born sub 24 weeks, then it is considered a “grey area” and is assessed case by case. As far as I can ascertain, this is entirely a post code lottery. In some hospitals they refuse to do anything to help a baby born below 24 weeks. They will not administer steroids to the mother to strengthen the baby’s lungs, they will not administer life saving treatment when the baby is born, the baby is left to slip away. It’s a heartbreaking problem, during my journey with Joseph I have met some dear children who were born before the magic 24 week mark. 

So here, perhaps, we are discussing what happens with babies that have been born, the decision was made to commence treatment, but it becomes apparent hours, days, weeks even months later, that things are tough, that the baby is not able to make it, but can be kept alive with the help that it is receiving in hospital. 

The controversial Australian ethicist Peter Singer says the following about newborn babies “Human babies are not born self-aware, or capable of grasping that they exist over time. They are not persons”; therefore, “the life of a newborn is of less value than the life of a pig, a dog, or a chimpanzee.”

It seems so foreign to me, perhaps because I have now seen so many babies born as foetus, they look so full of life, and of wisdom, and of hope. I cannot understand Singer’s views on this at all. And I do not wish to. But his influential writings have been accepted by some doctors.

So which babies do we save? Which ones do we invest resources into? Do we try and save all babies born regardless of gestation, do we discriminate on weight? What do we do with the problem of these very small premature babies.

During my research I found this beautiful article and I urge you to read it in its entirety.  Dr  Davies feels strongly the decision lies ultimately with the parents. 

“When the best path is unclear, fully informed parents are the best decision-makers. No one is closer to that baby in blood, body and spirit than the mother and father. Their best guess is the best one of all. No one else can decide for their baby as carefully, thoughtfully, purposefully and solemnly as they do. No one else can be more agonized, calculating and soul-searching. This is a decision that must be made with the mind, gut and heart. Your own baby would want you to make this decision, not strangers.” 

I would not like to live in a world where we predetermine, at birth, who lives – who dies. It’s not a world I would want to live in. As humans, we embark on great things, such as scientific endeavour, and we have a great power to save lives, to push boundaries, to bring babies into the world who would otherwise die.
We need, in the midst of scientific endeavour, retain our compassion, our humanity, our love for one another and our interconnectedness. 

These problems and struggles will never leave us, and as a community its up to us to guide our decision makers, to inform public policy, but most of all, to hold the hands and the hearts of those parents faced with the most impossible of decisions.


  1. Kylie, this is beautifully written. I have seen parents make the decision to let their little ones go and it is the hardest thing but sometimes the best thing but how do you ever know? I am holding one of my 27 weekers so tightly right now x

  2. As the mother of two 23 weekers I strongly agree. These are decisions that needs to be made on a case by case basis, with the involvement of parents and medical professionals alike.
    I was never consulted as to whether my babies would be resuscitated and, although the decision to remove life support is often presented as one belonging to the parents, that decision was (in truth) made solely by the doctors too. As I understand it, the issue would have ended in a court case if we have disagreed with the hospital.
    I believe a case such as my own family highlights the difficulties in treating babies of such short gestation.
    On the one hand, I have a perfectly healthy and happy toddler of two and a half. She may have some slight delays with her speech and movements but who is to say that these are solely attributable to her prematurity? They might just be the person that she is and was always going to be, early birth or not.
    On the other hand, my other daughter was resuscitated and survived for a little over three days. During that time she opened her eyes and held my hand. She died in the arms of her parents rather than in the delivery room. Who can put a price on that? How could I make the decision not to want those experiences but to let her die immediately after birth? With great difficulty. I can't fully bring myself to regret her life and the time that I spent with her.
    But I can't deny that her time alive was often painful and very hard for her parents to watch. Perhaps the right decision for me to have made, as her mum, would have been for me to ask the doctors to please leave her to die after she was born. I often wish I had been better informed (the birth of the twins was very sudden and unforeseen) and could have advocated for my children more strongly. But would I have ever seen that I needed to make two different decisions for my daughters? How could I know that two children of such similar weights and gestations and genetics would have such different roads through NICU?
    It's nearly an impossible call to make. I've often wished I had pleaded with the doctors never to START medical interventions and I've also often wished I had pleaded with the doctors never to STOP medical interventions. I'll always wonder if, by some miracle, I could have had both my children here with me today. When a baby is born at 23 weeks and is still breathing you are thrown into an ethical minefield, one where there are no absolutes and very little in the way of answers. Perhaps one day the neonatologists will have the crystal ball that you describe? It would be a fine thing to have.

  3. Catherine, thank you so much for sharing your moving story, so heartbreaking. That's why I chose to start this with the song, as I knew you and others who have made these heart wrenching decisions would be reading.

    We can only hope and pray for that crystal ball - it's so difficult to predict, impossible, what will happen in hours, days or weeks from birth.

    Until then, there are never any easy answers.

    Big hugs and thank you for reading.