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Monday, May 24, 2010

In the United States, between 1979 and 1983, 19,187 premature babies---my twin brother Brian among them---died from what was then called hyaline membrane disease, a condition caused by a lack of surfactant in the lungs.

At the time, HMD (now known as respiratory distress syndrome, or RDS) was extremely common: the leading cause of death for infants born, as Brian and I were, before 31 weeks gestation. Still, until I ordered Brian's death certificate from the state two years ago, I'd never heard of it, had never known how---or even precisely when---he died. (It was only then, in the summer of 2008, that I learned he died at four days old, not five.)

I learned, researching, that---to put it simply (and unscientifically)---surfactant is the grease in the machine. Breathing is hard work and surfactant, which is created during the last several weeks of pregnancy, makes that work easier. If a baby is born too early, before enough surfactant is produced, the lungs' wheezy, inadequate bellows are apt to malfunction, leaving the blood without oxygen.

I found that underneath the medicalese of the diagnostic criteria there's the grimmest kind of melodrama: a baby has to try and fail to take a breath. She has to struggle for it, to grunt and pant, to turn nearly purple with the effort of breathing. I learned that the treatment for it is as fatal as the syndrome itself: not breathing is awful; having a machine breathe for you is awful and more: both can lead to hemorrhage, seizures, sepsis, organ failure, brain death.

Though the syndrome is less common now, and much less likely to be fatal---mothers at risk for pre-term delivery are routinely given corticosteroids, which speed an infant's lung development and increase the production of surfactant---it is not rare: according to the Centers for Disease Control, 16,000 babies a year are diagnosed with RDS. More than 700 of them die.

I used to perceive statistics as a kind of wall: unyielding, impenetrable, offering little. Now I find that they're a sort of window: behind those numbers (700 lives ended every year) is this question: how many families are like mine?

  Word Count:
875 / 30000

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