Ten years ago today, our twins came home from the hospital after 78 days in the Neonatal Intensive Care Unit. At five and a half pounds and four and a half pounds, both were more than three pounds heavier than their weights at birth. They were born at 26 weeks, a full trimester too early.
The 11 weeks we spent watching our babies in the NICU, hooked up to respirators, feeding tubes, and monitors, are a blur now. But we kept careful notes, recording their vital signs, their “activities” (for lack of a better word), and their emerging personalities from the time they were four days old until the day before they came home.
In the early weeks, our opportunities to interact with our children were few and far between. They were too sick, and it often felt like there was little we could do for them. Recently, I read a description of the NICU experience in the Journal of Perinatology that captured the chaos of the early weeks:
As neonatal providers, we have become all too familiar with the overwhelming sense of powerlessness that grips every parent as soon as their infant is whisked away from the delivery room and into the neonatal intensive care unit (NICU). Despite efforts to paint the hallways with friendly mermaids and inviting underwater creatures, the inside of the NICU remains a universally intimidating world of alarms, ventilators and ominous diagnoses for families of every background.
To encourage parents to take an active role in their children’s lives, these medical providers instituted a “Babies and Books” program, which includes a lending library and mobile book cart. This program helps parents bond with their children. It also exposes children at risk of language delay to literature at an early stage and encourages literacy in the home. As the neonatal providers explain:
Perhaps neonatologists will never agree on the ideal management of a patent ductus arteriosus or the best strategy to prevent necrotizing enterocolitis. But it would be very hard for anyone on the medical team to dispute the potential beneﬁt of encouraging parents to consistently read, talk or sing to their premature infants while they are in the hospital.
We sang and talked to our babies through the openings in their incubators (until we were allowed to hold them), but apart from a recording of my husband reading Shakespeare’s sonnets that the nurses played after visiting hours, we never read to them. At the time, most of the books we had in our apartment were textbooks from law school. We didn’t have any children’s books, not yet, and while dealing with the torment of our twins’ early arrival, we didn’t have the wherewithal to buy any.
We would have benefited from a library at the NICU, and I suspect that many of our NICU roommates would have benefited from it, too. At 26, we were among the oldest parents of children receiving the most intensive care, and we were also among the most highly educated. Our hospital was in an urban area and served a largely marginalized population. Its patients were at a greater risk of preterm birth, neonatal death, and poor long-term outcomes than patients from more affluent communities. Discrimination has a bigger impact on children’s lives than prematurity.
I’ve lost touch with many of the families we met in the NICU, but I think about them often. I hope their children are doing as well as mine are. I worry that they are not.
RE Behrman, AS Butler, editors, Institute of Medicine (US) Committee on Understanding Premature Birth and Assuring Healthy Outcomes (2007) (“Not only does poverty increase the risk of being born preterm but it also independently increases the risk of adverse outcomes.”).
K Howard, et al, Biological and Environmental Factors as Predictors of Language Skills in Very Preterm Children at 5 Years of Age, J. of Developmental & Behavioral Pediatrics. 32(3):239-249, APR 2011 (“The finding that children of caregivers with lower education qualifications had lower expressive and receptive language scores is consistent with previous studies within the preterm literature and with studies of the broader population.”)
EA Howell, et al. Differences in Morbidity and Mortality Rates in Black, White, and Hispanic Very Preterm Infants Among New York City Hospitals, JAMA Pediatr. (published online January 2, 2018) (“Although rates of death have decreased, persistent racial/ethnic neonatal mortality disparities exist, with non-Hispanic black neonates dying at more than twice the rate of non-Hispanic white neonates and Puerto Rican neonates also having an elevated risk of death.”).
LH Rubinos, et al. The Story Behind NICU Reading Programs, 36 J. of Perinatology (2016) (linked in the text).