Just before their appointment Thursday, the family played together by the giant turtle sculpture at the University of Virginia’s Battle Building, with 16-month-old Seveyn at the center of attention. Seveyn’s mom, Diamonasia Rose, and dad, Antonio Chambers, take him to UVA Health Children’s for his regularly scheduled checkups.
The child was a little bit squirmy, with a serious demeanor that was accentuated by the tiny pair of glasses he wore. But he was all smiles when his playful dad joyfully lifted him.
Still, his parents worry about his social and educational development. It’s one of life’s little ironies: Babies who are ahead of their time can sometimes fall behind. Seveyn was born at 27 weeks, or 12 weeks prematurely.
The autism risk for infants born prematurely, for example, is more than three times higher compared to those born full term. Cerebral palsy and other neurodevelopmental challenges also rise with decreased gestational time.
Seveyn is one of about 100 babies currently enrolled in UVA’s multiyear tracking study of premature infants, which seeks to learn when and how they tend to stumble in their development. The first-of-its-kind study, a project of the UVA Brain Institute, will follow the children to age 5.
“We are currently working with research collaborators across Grounds to understand the factors that may contribute to some children experiencing learning delays into school age, while other children will not,” said Dr. Karen Fairchild, chief of the UVA Division of Neonatology and principal investigator for the Neonatal Intensive Care Unit.
Premature birth is defined as less than 37 weeks’ gestation, a couple weeks shy of what is considered full term. For about a year, the UVA Baby Brain Initiative project – BaBI for short – has been remotely surveying families who qualify and opt into the research.
The researchers communicate with parents over email or text every six months for ages 0 to 2 years, and then every year from ages 2 to 5. The assessments conducted are a mix of general development screenings and specific ones, such as for autism spectrum disorder.
“As infants get beyond age 2, the tools are better able to assess the child’s language and problem-solving, as well as their behavior,” Fairchild said. “These are things that are very important as the children approach the age of school entry.”
She added, “All of the assessment results are shared back with the families.”
Rose, Seveyn’s mom, said she appreciates that the research helps her stay on top of her child’s development, including “ways we should be teaching and working with him.”
But she also likes that her family can help others who may be concerned about their children’s development.
“We are strong believers in helping others, and we chose to do this to help other babies and to be able to share our experiences,” she said.
BaBI welcomes new families, whether the child is born at UVA or transfers into the NICU. Enrollment will continue indefinitely. While they generally approach all eligible parents they come across at UVA Health, the researchers can also be contacted by prospective participants at email@example.com.