Tuesday, November 27, 2012

Prematurity Awareness Month

November is.  Obviously I think prematurity awareness is an important public health/science/cultural issue, but it's also a strange one, because it encompasses several very different strands of experience.  From a public health perspective one of the biggest and most potentially solvable issues is preventable near-term prematurity.  This includes babies born at 36, 37, or 38 weeks by induction or c-section because a doctor or pregnant woman thinks it's time.  Maybe the woman is feeling terribly uncomfortable, perhaps the doctor is seeing small signs that the woman or her baby are developing problems, or perhaps the doctor or woman want the delivery to happen within a particular timeframe.

 Babies who come even a week or two early can have health issues related to prematurity, these issues cost money and cause personal stress.  LB's three month NICU stay cost around $500,000, as best I could tell from the very confusing insurance forms, and even a short NICU stay costs a lot.  So it's a issue, but not one that I find particularly relevant to LB's experience as a very early, very small preemie.    It does irritate me when the issues surrounding preventable near-term preemies and unpreventable early preemies are conflated.  A chipper "Keep those babies in Mommy!" makes me want to snap back with a "really, I should have waited until I was dead?"

There are also issues of reproductive choice.  While statistically we know that cohorts of babies do better when born later, for an individual baby the respective risks of early vs. term may be more uncertain.  Some efforts to reduce early births put pressure on doctors and hospitals with the collateral effect of reducing a woman's choices in birth.  For example, blogger Alexa Stevenson tells a harrowing story of wanting an near term birth due to serious medical risks to her baby, and receiving an initial denial due to her hospital's narrow interpretation of "medically necessary" deliveries.  I don't know how you could read this woman's story and not want her to have her baby ASAP.  In this Slate article, Eugenie Reich discusses her choice to carry her baby to 34 weeks, despite the advice of her doctors to induce labor weeks earlier because of a high risk of stillbirth.  In both of these situations the available "choices" sucked.  Both women sought to bring home a baby, and a baby that was as healthy as possible.  These hard decisions, where honest doctors admit that they are often guessing and hoping for a good outcome, are best made by a woman, her partner-if she has one, others she chooses to ask for advice, and her medical team.  The thought of having to deal with any other decision making bodies at such a stressful time is horrifying.  

For very early/very small babies the worst voices in the various debates are those who are unreflexive in their arguments that premature babies should always receive aggressive medical treatment because "all life is sacred," or conversely that care should be limited because "we should just let nature take its course," or "think of the medical costs."

The first group doesn't seem to have the empathy to imagine a very sick baby, who with intervention will lead only a painful and short life.  How can you not understand why a parent in that situation might choose palliative care rather than intervention?

The second group doesn't seem to understand the very wide range of preemie experience.  I was so upset when I read this blogger's discussion of what she might do if it appeared that she would give birth prematurely.  She seems like a nice woman who loves her kids very dearly, and it was hard for me to reconcile those facts with her statement that she might choose not to seek medical care for a baby of LB's gestational age.  I assume that she just doesn't understand that many preemies, like LB, are born pink and breathing, and that they need relatively little intervention to survive (warmth, oxygen, feeding support), so staying home with an early/small preemie could mean watching your living baby die over a period of hours or days.  As the parent of a healthy two-year-old former preemie, it's hard for me to see how denying her access to care in a NICU would have been any different than stuffing a full term baby in a garbage can (which is to say it would have been both child abuse and murder).  The assumption that it is "natural" to withhold support from all early/small preemies is likely due to a lack of education about the wide range of experiences/interventions/outcomes among preemies.  At 29 weeks and 1000 grams, LBs doctors were optimistic about her future, and within 48 hours of her birth they were very optimistic.

The money issue also drives me crazy.  I think the comment listed below, which was posted in response to the Slate article above is typical.  suppose it’s understandable in some ways, to think of newborn babies as provisional people.  If you think of a baby as a provisional person, then maybe you would like of that baby as less worthy of medical care. But I would expect thoughtful people to quickly see the problems inherent in this sort of easy utilitarianism for a society that values the humanity of people.  Should insurance companies be allowed to baldly calculate our human worth in a formula before paying out?  I don’t think you have to be hardcore pro-life type to see individuals as completely replaceable.  Personally, I'd like to force all those people who grumble about the cost of neonatal care to think about what care they would like to receive if diagnosed with a treatable cancer.  I hope that we live in a country where we agree that people, whether infants or elders, deserve the medical care they need to survive.

Happy Prematurity Awareness Month!

Link for comment reproduced below is here.

There is unlikely to ever be a good answer to this problem if we're going to debate the merits of life at all costs vs quality of life. The only way to narrow down the answers is to look at it economically. Keeping premature babies in the NICU is extremely expensive -- we are using limited resources on what are already not going to be the healthiest and best-functioning members of our society. These same resources could be used to, as an example, keep already existing children elsewhere in the world from starving or dying of easily preventable diseases. These resources could be dedicated to a new, potentially healthy pregnancy (one that the mother cannot possibly start until the current pregnancy is over). 

We cannot, however, discount the cost of emotionally damaging the parents to be. We have placed a higher value on this than the amount we could save by letting nature take its course. We could probably calculate the true economic loss involved in order to come up with two financial figures -- one for having the premie, and one for not. This would give us some kind of clear answer as to what is, on average, the best course of action. 
What we do with that information (how we might use it to guide anyone's course of actions), is quite open to discussion and will ultimately lead to a debate about the extent of the parents' rights versus society's interest (since the parents do not carry anywhere near the full financial burden of the premature baby). 
The whole thing is a very interesting thought problem.

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