How do you decide whether or not to treat a very sick baby?

Is it better to have a longer life with painful treatment or a shorter life with better quality? Who decides that and how do they make that choice?

Last week, the Royal College of Paediatrics and Child Health issued a new framework to doctors in the UK advising that treatment of very premature babies may not always be the correct way forward. In particular, the new framework highlighed babies born between 22 and 24 weeks.

In 2011, noted feminist and writer Jessica Valenti wrote in The Guardian about the first few days with her daughter:

The bad days are too painful, and private, to describe. But good days or bad, she did not look like a well baby to me. She looked like a baby that would die.

This feeling was only exacerbated when we were allowed to hold Layla for limited periods of time. I didn’t cherish those few minutes – I dreaded them. About half the time I held my daughter her heart rate would dip dangerously low or she would stop breathing and turn blue. When the alarms when off, a nurse would quickly snatch her from me to give Layla oxygen, or sometimes tap on her chest to stimulate her heart.

Layla was born at 28 weeks in 2010. She spent the first 56 days of her life in a neonatal intensive care unit.

While Valenti’s piece explores the nature of maternal love, her words above give us a unique insight into the experience of loving and caring for a baby born far too early and for whom life is not guaranteed.

The parents of very premature babies walk a difficult path. They face not only questions about how to show love to a tiny baby, about where you draw that emotion from within yourself, about how you even physically offer that love to a baby hooked up to foreign machines, holding the baby correctly juggling tubes and wires, but also questions about what treatments are appropriate, how aggressive to be. Sometimes they face questions about whether or not to give the baby medical treatment at all.

The treatment of premature babies, especially those born very early, is an ethical minefield.

With advances in medical technology, it is now possible for some babies born this early to live. But the treatments are aggressive and in most cases where the baby survives, they will almost certainly face a significant physical or mental disability.

iVillage Australia spoke with Dr Andrew Watkins, a neonatologist with experience in bio-ethics in palliative care of infants, from Mercy Women’s Hospital in Melbourne about the treatment of very premature babies in Australia.

He told us that there is currently no clear national guideline about making a decision to treat a baby born prior to 26 weeks. Rather, decisions are made on an individual basis taking into account the factors of each case; the prognosis of the child, the parent’s wishes, and the capabilities and aggressiveness or otherwise of the treating team and the equipment available to them.

But making a decision to treat or not to treat is difficult, ethically speaking. Take, for example, a group of babies born at 23 weeks. Without treatment, all of them will die. That’s the bottom line. But with treatment, only half of them will live, and of that half a significant proportion of them will most likely have significant physical and mental deficits.

“If aggressive treatment produces a child who lives three score and ten with a good life that’s a price worth paying. On the other hand, if aggressive treatment deprives babies and parents the opportunity to experience a loving relationship then perhaps it may be a better option not to treat if the treatment is burdensome and only produces a poor outcome,” Watkins said.

“At the core of any decision is what’s in the best interests of the child, but how to determine that is very difficult.

“Quality of life is a leading determinant of ceasing treatment decisions.” But Watkins was quick to point out that what quality of life might mean for one person may be very different for another.

Do you think there should be a blanket rule for whether or not to treat premature babies?

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