When Jennifer DeCesari learned that she was about to deliver her baby at 28 weeks, her first reaction was to say, “I’m a preemie, too. Everything will be OK.”
But now, DeCesari sees in her daughter’s struggles reminders of her own painful childhood. And she has found that everything is not OK.
DeCesari was born in Boston in 1978 at 30 weeks’ gestation, weighing just over 3 pounds. She was socially immature, physically weak and uncoordinated until high school — a scared, awkward little girl who got so lonely at lunchtime that she’d talk with her mother on a pay phone.
“I see similar things in my daughter,” DeCesari says now. Arianna was born in March 2006 weighing just under 3 pounds. Despite a comparatively easy time in the neonatal intensive care unit — the baby needed a ventilator for only 18 hours –– Arianna has had a hard time growing since she came home. She got sick immediately, required two hospitalizations and fell prey to every bug that wafted by.
DeCesari could not leave her job as a computer programmer because she held the health benefits for the family. To keep Arianna away from the germs in day care, she spent her salary on a nanny. Eventually her husband, Shawn, got a job with benefits and DeCesari left hers.
Meanwhile the little girl developed severe reflux and to this day has difficulty eating. At age 3, Arianna is physically fragile and very tiny: at her June checkup she measured 33 inches tall, and weighed 26½ pounds. She didn’t walk until she was 1½ and today still has to crawl to get up the stairs. She has asthma and catches colds easily. She has a stutter.
“She gets sick a lot,” DeCesari says. “Every single time she gets a cold she doesn’t eat for a week. They’ll weigh her, they’ll look at me, ‘She’s lost more weight.’ … Frequently she’s off the [growth] chart, not even on the chart. No matter what I pump into her she doesn’t gain any weight.”
Now DeCesari, who lives in Cumberland, is wrangling with the school system to get services for Arianna, facing long waiting lists for programs such as speech therapy. But Arianna is bright, already able to read.
Looking ahead to Arianna’s school days, DeCesari says, “She’ll be emotionally behind all the children her age, making her a target for teasing, and will have some attention and focusing problems. … I don’t see her childhood being an easy one.”
But DeCesari remembers that once she got to high school, her own social problems improved. She did well academically and attended college. She thinks prematurity hasn’t affected her adult life, except for some vision problems. And she hopes Arianna will be as fortunate.
