“Preterm birth is not a setup for adversity, and we need to stop thinking that it is a limiting factor in life,” says Michael Msall, MD, section chief of developmental and behavioral pediatrics. Msall and his colleagues Bree Andrews, MD, MPH, and Scott Hunter, PhD, are following more than 1,000 children born at least three months early between 2002 and 2004 as investigators of the NIH-funded Extremely Low Gestational Age Newborns (ELGAN) study. The research is being conducted at the University of Chicago Medicine Comer Children's Hospital and 13 additional hospitals in five states.
Children born at less than 28 weeks gestational age are actually quite resilient, according to the most recent wave of research on the cohort of 1,200 preterm babies when they turned 10 years old. Children who are born extremely premature are assumed to be more developmentally vulnerable, with higher rates of neurosensory impairments, behavioral and socialization difficulties, and lower performance on cognitive, language, and motor skills than term peers. However, the study also found approximately 75 percent of 10-year-olds born extremely preterm had average intellect, and nearly 70 percent were free of neurodevelopmental impairments.
Among the 873 10-year-olds Msall studied, 25 percent who had an extremely low gestational age have cognitive impairment, 11 percent have cerebral palsy, 7 percent have autism spectrum disorder, and 7 percent have epilepsy. Approximately half of the children with cognitive impairment and one-third of children with cerebral palsy, autism spectrum disorder, or epilepsy had only one impairment. Neurocognitive function and academic achievement at age 10 in twins born less than 28 weeks of gestation was also no worse than their singleton peers.
“These children are making progress academically and in their social and emotional maturity,” says Msall. “The 25 percent who had neuropsychological challenges did not have severe disabilities, but, rather, they had some reading or math processing differences, executive function difficulties, and special learning needs that made them less competitive than their classroom peers.Yet with the right strategies, such as typing instead of writing, use of organizers to develop book reports, and tutoring supports, many were doing well academically, and all were learning,” he adds.
With the right supports and resources, these children can really surprise you with their successes, but they need early interventions to address their challenges instead of a wait-and-see approach that later determines they are not ready to learn in kindergarten.
Michael Msall, MD
The ELGAN study cohort did have a higher risk for autism: one in 14 children born at 28 weeks had autism spectrum disorder at age 10 and one in six born at 24 weeks, compared with one in 50 for boys born full term and one in 100 for full-term girls. But even in these instances, the babies did better than expected. “Twenty-five percent of extremely preterm newborns screened positive for autism spectrum disorder by age two, using standardized screening measures recommended by the American Academy of Pediatrics,” says Msall. “However, when we comprehensively assessed the 10-year-olds with the Autism Diagnostic Observation Scale, the gold-standard test developed at UChicago Medicine Comer Children's Child and Adolescent Psychiatry Program, and observed the child’s social, emotional, and communication skills and imaginary activities, we demonstrated that half the kids who were at risk for autism didn’t have it,” says Msall. “The screening test is not diagnostic. Children need to be more comprehensively evaluated during preschool years and need to access developmental and educational supports.”
Msall and his study colleagues also evaluated the accuracy of the Bayley-II Mental Development Index (MDI) used to predict cognitive impairment at school age among children born extremely preterm. He found that nearly two-thirds of children who were assessed to have low MDI scores at age two had a normal IQ at age 10. The test was, however, more predictive of cognitive impairment among children with major motor and/or sensory impairment.
Attention deficit hyperactivity disorder (ADHD) is a bigger problem than autism spectrum disorder for extremely preterm babies. One-quarter of ELGAN children have ADHD compared with 10 percent of the children born at term. “Sixty percent of the ELGAN population has an Individualized Education Program or 504 Plan accommodations at school,” says Msall. But with those supports, kids like Bella (pictured above) have successes and are making the same progress as full-term children with ADHD.”
“Proactive developmental and educational supports are also critical to optimize academic performance, physical and behavioral health, relationships, and employment in children born extremely preterm,” says Msall. “Children from disadvantaged backgrounds, in particular, face significant disparities both in access to comprehensive and continuous supports and in long-term academic outcomes. With the right support and resources, these children can really surprise you with their successes, but they need early interventions that address their challenges instead of a wait-and-see approach that later determines they are not ready to learn in kindergarten.”
Msall and other ELGAN researchers are currently collecting data on the children who are now 15 to 18 years old. “In wave 3 of the study we’re looking at physical health, respiratory health, growth, academic achievement, psychological profiles, cognition, executive function, working memory, and brain MRI scans,” says Msall. “We are interested in better understanding resilience, especially when children with these vulnerable brains have supports and opportunities to learn.” He adds, “We are very hopeful that teenagers like Isaac (pictured above), who successfully obtained a black belt in tae kwon do and is doing well academically in his freshman year of high school, will continue to show the world their potential.”