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Monday, September 12, 2005

She Has Gone Among the Angels

The story of Susan Torres blanketed the local DC media for most of the summer. On May 7 of this year Mrs. Torres, aged 26, suffered a stroke caused by malignant melanoma and was pronounced brain dead. At that time, she was 17 weeks pregnant. There was absolutely no hope that Mrs. Torres would recover, but her family decided to continue life support in the hope that she could be kept alive long enough to safely deliver her unborn daughter. That daughter, named Susan Anne Catherine, was delivered on August 2nd, and Mrs. Torres died a day later after being removed from life support. Susan Anne Catherine was still more than two months premature, weighed less than two pounds, and although as healthy as could be expected under the circumstances, was still in a precarious state.

Insurance for the Torres family didn't begin to cover Mrs. Torres's hospital bill, never mind the costs of neo-natal intensive care once Susan Anne Catherine was delivered. In the face of initial estimates that $400,000 in unreimbursed costs would be incurred, a blogosphere-driven fund drive raised $600,000.

Susan Anne Catherine Torres died yesterday, when her heart failed after emergency surgery to repair a perforated intestine. She was five weeks old. May she rest in peace, in company with her mother and all the saints and angels, in the eternal light of God.

The Torres case is an extreme example of a facet of American medicine that is widely misunderstood. We are constantly criticized for spending more than other countries on health care, yet our infant mortality rate is higher. Nick Kristof's been beating this drum for months; first we were lagging behind Cuba and China, then he couldn't even write about Hurricane Katrina without dragging the dead babies back into it. But consider this: when this year's health expenditures are totalled up, they will be a couple of million dollars higher, and when this year's infant mortality statistics are calculated, there will be one more infant in the numerator, all because the Torres family, and their friends and supporters, cared so much about one unborn child that they expended every resource they could muster to give her one unlikely chance at life, a chance that ultimately failed.

Susan Anne Catherine Torres is just one case, but according to the CDC, not an isolated one: when asked to investigate the reason that infant mortality increased in 2002, for the first time in several decades, they discovered that the number of extremely-low-birth-weight infants born alive has increased dramatically. In most countries, these children would be stillborn. Here, they usually die soon after birth, despite our best efforts. It makes no sense to unfavorably compare a country that tries to save lives with those who give up without trying.

6 comments:

Jay D. Homnick said...

What Kathy means is that when we detect an irreversible crisis in the womb we extract the child and give it a chance to survive outside.

In other countries, they allow the body to do its thing, and those crises generally end badly, with the child dying and being expelled by the body in that condition.

Kathy Hutchins said...

your sentimental story isn't necessarily extrapolated to a national ethos or any statistical significance.

I worked in public health for ten years; I know what typifies a standard approach in American neonatal ICUs, and how it differs from Europe, never mind China. Infants that we expend resources to save in this country are routinely set aside to die in other countries, and put down on the books as stillbirths.

As far as being a significant trend: we're trying to explain 447 excess deaths. We note an increase of almost 500 in extreme-low-weight births. I don't think it's a huge stretch to posit a connection here.

the actual data that you cite to which supports neonatal technology for the reason for our high infant mortality rate only refers to one year's increase 2002

The study was published in 2005, and 2002 is the most recent year which has been analyzed in depth. Lags of this magnitude are not unusual at CDC.

Kathy Hutchins said...

how do you explain the fact that there hasn't been an increase since 1958 until 2002. Were we using extraordinary measures then?

In the US, "extraordinary measures" has usually meant "the edge of the technological envelope." In general, infant mortality from birth to age one, after the antibiotic/vaccine revolution that occurred in one birth mid-20th-century, has largely been due to improvements in prenatal and perinatal medicine: better management of chronic maternal conditions like diabetes and hypertension, better fetal monitoring during labor, better neonatal intensive care procedures, and advances in neonatal surgery. These are improvements that have come on gradually, and that have produced gradual decreases in infant mortality, even among low and very low birthweight infants. From 1985 to 2001, mortality decreased for low birthweight infants enough to counteract the fact that low weight births were increasing as a percentage of total births.

As is detailed in the full CDC report (and believe me, I understand that most people do not perceive any entertainment value in reading CDC reports) the increase in infant mortality was entirely explained by the increase in live births at incredibly low birthweights -- under 500 grams. This mortality increase was present across all ethnic groups and all maternal ages. So it really does not seem to be due to any characteristic of the mother, such as poverty, but rather due to medical management of these pregnancies, and a shifting of death from before to slightly after birth. (The report also notes that almost all of these excess deaths occurred less than 7 days after birth.)

I don't feel the need to apologize for America. I want to see us do better, always.

The point I'm trying to make is that in this case I think the statistics actually show that we are doing better. In the past 20 years we've pushed the gestational age at which half the babies survive back from 26 to 24 weeks. When you accomplish these shifts, there may be a few years in which your statistics look worse because you're trying to accomplish much more.

Here's an analogous situation in adult medicine: if you ever have to have some sort of risky medical procedure done, do not choose the hospital with the lowest mortality rate for that procedure. Choose the one that performs the greatest number of procedures. Doctors who do more procedures are better at it, and thus attract the high risk cases, which worsens their mortality data. But for a specific patient of any given level of risk, choosing the more experienced doctor is the risk-minimizing choice.

James F. Elliott said...

As an interesting aside, our ability to keep low-birth weight and premature infants alive has led to a marked increase in the incidence of developmental disabilities. Yet "smaller government" principles have allocated less and less resources to their treatment and welfare.

Another interesting aside: We are one of the few countries that practices cutting of the umbilical cord instead of letting it die. In those countries that let it perish, their incidence of developmental disability are significantly (and I do mean in the in the statistical sense) less.

Kathy Hutchins said...

Another interesting aside: We are one of the few countries that practices cutting of the umbilical cord instead of letting it die.

I think you have misunderstood something. The debate is whether to clamp the cord immediately or wait until the cord stops pulsing, which takes about two minutes. The cord is attached to the placenta, which is about a pound of membranous tissue. It takes one to two weeks for the stump of the cord to spontaneously detach from the navel. There is no way "most countries in the world" leave a pound of decaying tissue attached to a newborn for two weeks.

James F. Elliott said...

I fully concede that it may have referred to clamping and not cutting and I misunderstood.