Monday, November 14, 2011

"A Child in Time"

Today's reading assignment for Prematurity Awareness Month is a New Yorker article, "A Child in Time: New frontiers in treating premature babies". It covers a lot of ground, but the gist of it is all about the challenges, uncertainties, and medical progress surrounding premature birth, the NICU, and the eventual prognosis for such children.

It's difficult for me to read articles like this - just as with the Micro-Preemie Power comic we linked earlier this month, there's enough commonality between our story and the stories of the preemies here that it gives me something like PTSD flashbacks to read it. Nonetheless, it's worth reading.

Some excerpts that spoke to me in particular:

How far the NICU has come in fifty years:

On August 7, 1963, when a second son was born to President and Mrs. Kennedy (...) delivered five and a half weeks early, by Cesarean section, and weighed four pounds ten and a half ounces. (...) Baby Patrick died, thirty-nine hours and twelve minutes after his birth. The Times later reported, “The attending physicians certified to a diagnosis of prematurity and hyaline membrane disease . . . a lung disorder that takes the lives of about half of the 50,000 babies who contract it every year.” (...) [Now, 50 years later,] “Survival at thirty-two weeks’ gestational age is nearly a hundred per cent.”


About the uncertainties of a "Web-based algorithmic calculator, which allows a doctor to enter the premature infant’s characteristics and find its chances of death and disability":

[A 24-week triplet boy's] chance of death was fifty-three per cent; of death or profound neurodevelopmental impairment seventy-one per cent; of death or moderate to severe impairment eighty-five per cent. “Every baby is unique, and every family is unique,” Martin said. (...) Although the algorithm was designed to provide estimates, often it actually reinforces the uncertainty of outcomes. (...) [A picture of this boy today] shows a smiling first grader, now six and a half years old. (...) One of the drawbacks of the algorithm is that the prediction of cognitive and other neurodevelopmental abnormalities relies on testing at eighteen months. (...) Early testing can frighten parents by highlighting developmental limitations that later resolve. On the other hand, it can give false reassurance when a baby tests well at eighteen months and later develops A.D.H.D. or delayed language skills, which are the two most common late-onset effects of prematurity.


On the loss of a 24-week preemie:

“I’m not really into who has the worst story, because there is always a worse story,” she told me. “But I’m so grateful for those days we had. I didn’t at the time realize how important that month was. But now I know. You don’t realize when you are pregnant how fast you start planning. You don’t realize all the dreams that you have for the child. Those days do mean something."


Go. Read the whole article. You'll be glad you did.

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