Sunday, August 14, 2005

Calling all preemie parents, past and future

Today's New York Times Magazine has a must-read article by Paul Raeburn, "A Second Womb." For years, there's been evidence of cognitive deficits in kids who started out as preemies or low-birth-weight infants. This article suggests that the NICU environment may be partly responsible for this. The bright lights and loud noises are so different from the experience in utero, and gravity and flat Isolette beds make it hard for preemies to curl up the way they did before birth.

Heidelise Als is a developmental psychologist at Harvard Medical School and Children's Hospital. She's been focusing on the NICU from a baby's standpoint: how does a tiny baby react to the stimuli? What is he missing from the womb environment? How can the NICU be made to more closely approximate the womb, easing the baby's transition to the outside world and cushioning his brain from the sensory assault?

Als has a bold but eminently logical idea for NICU design: Place each infant in his own warm, climate-controlled "womb room" where his family could stay full-time until he was ready to go home from the hospital. Of course, no hospital has the space and funding to provide womb rooms for each preemie, but it's good to have an ideal to shoot for.

The article is sobering. I read it and was sad for Ben's experience in his first 40 days on the outside. It was bright, with small windows and a bank of fluorescent lights. It was loud, with nurses, doctors, and parents talking, with other babies crying, with monitors shrieking alarms without notice. It wasn't very cozy in his Isolette or, later, in his open bed. We couldn't hold him much of the time. If he was sleeping, we usually let him be. My husband went to work in the daytime, and I had to visit the pumping room every 2 to 3 hours. We returned home each evening, so it was Ben in a box alone every night. (At least the staff dimmed the overhead lights at night.)

Ben's brain wiring is a tad off, as you might suspect after reading the NYT article. He needed extra time (and lots of speech therapy) to learn to communicate verbally (thankfully, he's all caught up now). The way he processes sensory input isn't quite right, and while he's essentially a normal, healthy kid, if he doesn't have his weekly occupational therapy sessions, his behavior degenerates markedly. I don't know how he'll do in the noisy kindergarten environment, and I don't know if he'll exhibit any learning disabilities (such challenges are not uncommon in kids who were born prematurely). No specific cause has been identified for the sensory issues, to my knowledge; plenty of kids who were born at term have similar problems. But I can't help suspecting that being ripped untimely from his mother's womb played a role in Ben's brain developing the way it has.

Ben's smart, curious, observant, social, and active (and has an innate talent for schmoozing). He has educated and involved parents who pay attention to his development and seek out any interventions that might help. But if the NICU had been a warmer, more soothing environment—set up per Als's recommendations—and better eased Ben's transition into the outside world, would he need those OT sessions to keep on an even keel? I wonder. I do wonder.

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