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April 03, 2011 | By:  Khalil A. Cassimally
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Should Extremely Preterm Babies Be Saved?

Most infants stay in their mothers' wombs for around 38 to 41 weeks before they join our world of lights, sounds and smells. Some infants however, defy Nature and relinquish the optimal home that is the uterus before time. The strong ones will ultimately survive and live normal lives but those who are born much too prematurely, such as those born at 23 weeks of gestation, face a battle for survival. But is this battle doomed from the start?

A gestational age of 23 weeks is considered as the edge of viability. Births occurring anytime earlier are usually considered as miscarriages. In the UK, nine out of a hundred infants born at 23 weeks of gestation will survive although only one of them will live a fully able-bodied life. What this means is that 91 of every hundred infants born at 23 weeks of gestation in the UK will die in the neonatal intensive care unit, eight others will be plagued for the rest of their lives by handicaps or severe medical conditions while only one will be able to live a normal life. Only one percent.

This revealing statistic begs the question: should these infants at the edge of life be saved at all?

In the placenta, the amniotic fluid bathes the infant and protects and nourishes it. The brain, which grows by three-fold in the last three months of pregnancy, is able to do so in the best possible environment. When such an explosive and crucial development is carried out outside the optimal conditions provided by the mother-as in the neonatal intensive care unit-however, the development may be hampered. For instance, continuous sensory bombardment may disrupt the infant's normal sleep-wake cycle while the number of medications administered may directly affect the brain, all leading to the possibility of brain injuries [1].

Injuries that occur very early during brain development may have very severe consequences. BBC Two's documentary, 23 Week Babies: The Price of Life, portrays Heather, who was born at the very edge of viability and suffered a hemorrhage in the first few weeks of her life. Now 21 years of age, Heather is permanently quadriplegic, able to use her left arm only.

"Basically if my mother or the carers don't come, I'm stuck in bed all day," she said.

"I just wished I could end my life. There is obviously nothing else for me in my life, so what is the point of carrying on?"

There has long been concern about long-term outcome for very preterm survivors. Typically, those born before 25 weeks of gestation are attributed with poor quality of survival and too expensive treatments.

In the past twenty years however, tremendous progress has been made in neonatal care. Survival rates have gone up. The largest increase in infant survival rates in Victoria, Australia, from 1991 to 1997 has occurred in infants born at 23 weeks of gestation [2]. However, although survival rates have improved, it does not change the fact that, still, only a small fraction of those survivors will ever live a normal life.

With this in mind, the dilemma then is whether a life that has an eminent chance of being plagued by severe handicaps, as in Heather's case, is worth saving at all.

It is painful and harsh even that this dilemma falls on the shoulders of the family. In many ways, this situation is reminiscent of the dilemma imposed on the families of terminal patients. Prolong their lives by some days or months or allow them to drift away from all the suffering and despair?

As Atul Gawande narrates in his poignant article, Letting Go, about terminal patients in The New Yorker:

The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. [...]We'll sacrifice the quality of your existence now-by performing surgery, putting you in intensive care-for the chance of gaining time later.

While medicine has definitely made a lot of progress in recent times, we must be very aware that it is mostly powerless with regard to very preterm infants. It may save lives but most of the time, it's at terrible costs.

Image credit: Top ceejayoz (from Wikimedia Commons); Bottom Official U.S. Navy Imagery (from flickr)


[1] Wyatt, J. Mechanisms of brain injury in the newborn. Eye 21, 1261-1263 (2007).

[2] Doyle, L. Neonatal intensive care at borderline viability--is it worth it? Early human development 80, 103-113 (2004).

April 07, 2011 | 02:35 AM
Posted By:  Khalil A. Cassimally
Laura and John,

It is indeed a very compelling argument that we should strive to save a premature baby because there is hope, even though it is very bleak indeed. However, the question really is whether the risk is worth it. 91% will die while being constantly 'troubled' by the medical interventions. Doesn't this 91% deserve a better treatment than to be put in a lot amount of pain before ultimately dying?

Obviously, I can't answer the question. It's the parents who have to make the decision. So maybe, medicine should give them an idea of the greatness of the risk that trying to save the premature babies involves rather than going full-force into desperately trying to keep them alive.
April 07, 2011 | 01:52 AM
Posted By:  Katherine Hamilton
I think Mr. Locke has just proven my point from the last sentence of my first post.
April 06, 2011 | 03:30 PM
Posted By:  John Locke
Why stop at pre-term infants? By using a strict set of metrics (based on current health records and genetic profile of an individual) society could determine the cost of medical care versus an individual’s value to society. This would be an effective technique to evaluate many groups of people for their fitness for life, e.g. the elderly, the sick, handicapped, etc. Strict standards should be set in order for any life to be extended by medical care; determining whether “life unworthy of life” exists. If a person fails the test, then they would be humanely euthanized, saving millions of dollars for strained budgets. In the 1930’s Nazi Germany created a law “Law for the Prevention of Hereditarily Diseased Offspring” based on an existing California state law of that time. Fritz Lenz and Eugene Fischer were instrumental in developing the theory and implementing the practice quite effectively as judged by Nazi standards. Why stop at pre-term infants? The Nazis didn’t. Disgusting.
April 06, 2011 | 01:03 PM
Posted By:  Laura Wheeler
(PART2) At the time of my birth, technology was good, but today technology is even better. If a baby is born before viability I think doctors should uses all their knowledge and skills, to do their very best to make sure the baby survives. I know you refer to the case of Heather, this is an unfortunate example, but many premature babies, that sadly do grow up to have disabilities, have fulfilling lives. As you figures reveal that only 1 out of the 9 babies (out of 100) that do survive will have a normal life, that is a low figure, but that is still a life. Surely we can’t consider not treating these premature babies, if there is still a hope, no matter how small it is?
April 06, 2011 | 01:02 PM
Posted By:  Laura Wheeler
(PART 1) Thanks Khalil for this excellent piece! You have really touched on a controversial topic. I was born a month premature, I know this isn’t the same as being born 3 months premature, but at the time, there was a worry for my health. I was intensive care, and in an incubator (I had jaundice) for 8 weeks before my parents could take me home.

April 06, 2011 | 03:38 AM
Posted By:  Khalil A. Cassimally
Hi Katherine, thanks for the comments.

The only thing doctors or carers can do is to provide as much help as possible to the parents before a decision is ultimately taken. By showing them the risks involved, they will make an educated choice. Whatever decision they then take is up to them. I don't think we can judge. After all, we are culturally programmed to do our best to save lives, are we not?

There's an interesting thing I didn't mention in the post however that's worth pondering on. It is interesting to note that while the edge of viability is 23 weeks of gestation, the limit for a legal abortion in the UK is at 24 weeks of gestation.
April 03, 2011 | 05:12 PM
Posted By:  Katherine Hamilton
I think parents of very pre-term infants are reluctant ever to deny treatment not only because they fear losing their beloved child, but also because they believe withholding treatment is the same as killing their child. And doctors, who are usually eager to try out the latest procedures and technologies, rarely touch on that belief, let alone confront it. There is almost never a discussion of when allowing nature to take its course is more merciful and more humane than tormenting the tiniest of human beings with endless medical interference that has very little hope of producing the desired outcome.

Part of parenting is taking responsibility for your child's long-term quality of life when your child cannot. We need to give parents better support for making the most difficult of those decisions.
April 03, 2011 | 05:11 PM
Posted By:  Katherine Hamilton
Thank you for writing about this topic. We have such an extreme cultural fear of death in the U.S. that it is very difficult to have meaningful conversations here about when efforts to prolong life become an act of cruelty. We have started to get better at having these discussions with elderly patients, but we are still unwilling to have them with parents of pre-term babies at the extreme edge of viability. And we tend to stigmatize people who want to discuss these issues as valuing cost savings over human life.
April 03, 2011 | 09:56 AM
Posted By:  Khalil A. Cassimally
Would especially welcome your views on the matter. What do you think should be done?
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