Sharan Bryson’s son, Chris, was born at 34 weeks old and weighed only four pounds, three ounces. Fifteen years later her daughter, Meah, was born at just 26 weeks. She weighed a mere two pounds, one ounce.
Risks for premature babies can include heart and lung complications, cerebral palsy, blindness and deafness. In addition, premies also are five to eight times more likely than babies born at term to need special education services for developmental or learning problems.
Though she was at higher medical risk than her brother, Meah has had better developmental outcomes. Because of a unique Nebraska program called Tracking Infants Progress Statewide (TIPS), her needs for development services were identified earlier. At just 16 months of age, she was referred to Omaha Public Schools for speech therapy.
Founded at the University of Nebraska Medical Center Munroe-Meyer Institute (MMI) in 1999, TIPS provides specialized, systematic developmental follow-up at 6, 16, 24 and 36 months for most babies who have been in a Neonatal Intensive Care Unit (NICU). It offers a more formal, in-depth screening than most physicians can provide and assesses overall developmental milestones.
“The goal is to gather information about how babies who have been in the NICU grow and develop in order to learn how to better meet their unique needs now and in the future,” said Barb Jackson, Ph.D., co-director of TIPS and director of education and child development at MMI. “If we can catch a problem at 6 or 16 months, we can implement early intervention as soon as possible. Doing so maximizes positive impact and potentially prevents the need for specialized services in kindergarten.”
Prior to MMI leading the TIPS model, there was no organized follow-up program for NICU graduates. TIPS has grown to a collaboration among 10 hospitals in the state, the Nebraska Department of Health and Human Services, Nebraska Department of Education and MMI. It’s the only known statewide follow-up program and is a primary referral source for the Early Developmental Network.
Before speech therapy, Meah wouldn’t mimic or even mumble speech sounds. The lack of communication left both her and her mother frustrated. Now 3, Meah’s able to share her wants and needs.
“Instead of whining or crying, she’s able to express herself more and tell me things like ‘Mommy, I’m hungry,’ or ‘Mommy, I want my blanket,’” Bryson said.
Meah graduated from special education services and now attends a Head Start program in Omaha where she continues to work on her communication skills.
“It’s amazing how far she’s come,” Bryson said. “I can really see the difference between her and her brother. There was a lot more support with her than with him.”
After tracking the progress of more than 10,000 children, TIPS not only has touched the lives of families across Nebraska, but also has contributed to national knowledge that guides practice and policy through its research.
For example, TIPS data has shown that late pre-term babies like Chris who are born as late as 34 or 35 weeks still have a high risk for referrals for special education services.
“The results from that study indicate that these babies have more risk for developmental problems than previously thought,” said Howard Needelman, M.D., medical director of TIPS. “The implications are that health care providers become aware of the risks associated even with these bigger premies. We’re working to change the dialogue with obstetricians and family practitioners so they’re less willing to deliver at 34 weeks and put babies at risk.”
Drs. Jackson and Needelman are hopeful that data collected from TIPS can lead to other improvements in clinical practices. A current study monitors premies who are now in first grade, not only for educational outcomes, but to study their social and emotional development as well.
“We have such a rich source of data that our challenge is to find new research questions to inform future policy and practice,” Dr. Jackson said. “Such information contributes to the critical discussion related to the costs and benefits of health care investments.”
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