When Boston Children’s Hospital surgeons and clinical teams discuss treatment options for neonates with necrotizing enterocolitis, they use information gleaned from thousands of similar infants in Vermont Oxford Network’s Very Low Birth Weight and Expanded databases.

Tom Jaksic, MD, PhD, and Biren Modi, MD, MPH, of Boston Children’s Hospital (BCH) strategically built a foundation of research that they use in their discussions with colleagues and parents daily. Analyses of VON data have allowed them to observe rare conditions, greatly improving the clinical team’s ability to counsel parents about care for high-risk infants.

The collaboration between VON and BCH has led to 10 papers studying surgical outcomes for neonates, predominantly focused on NEC. The result “has been incredibly important to us as practicing clinical pediatric surgeons here at Boston Children’s, and to the whole community of pediatric surgeons in the United States and the world,” said Jaksic.

While BCH surgeons had a sense that outcomes were worse for patients treated for NEC surgically rather than medically, they did not have the data to support that assumption. The research with VON provided evidence and insight into outcomes based on birth weight, treatment type, and other characteristics.

“We can now tell the parents of an average neonate who develops necrotizing enterocolitis what their prospects are specifically based on the types of NEC – whether it is medical or surgical – and based on the background of the patient, in terms of how big they were when they were born, whether they had congenital heart disease or not, whether they were full term or premature,” said Modi.

Research also categorized growth and neurologic outcomes at 2-3 years of age using VON’s Extremely Low Birth Weight (ELBW) Follow-up Database. This research can help the clinical team and parents understand the probable growth and neurological outcomes of neonates with specific characteristics several years after treatment.

“All this information is incredibly important for parents to know when making the decision to pursue aggressive interventions. Parents want to know more than the risks of their child surviving or dying; they want to know the likelihood of reasonable growth and what their lives will be like in two years and beyond,” said Jaksic.

Growth and neurological disability rates for infants treated surgically for NEC were significantly higher than for infants treated medically, which in turn were higher than rates for equivalently premature infants who do not develop the condition.

“Quantitatively, we were surprised how high the incidence for surgical NEC was for neurological disability. Now the challenge is on us to improve and to decrease those gaps in outcomes,” Jaksic said.

This important research would not have been possible without the dedication of VON members who voluntarily contribute data in a global effort to improve care of high-risk newborns. The research is available for colleagues in surgery and neonatology worldwide to collaborate and provide the best care and counsel for infants and families. Clinical teams can make more accurate prognostications and help families make better decisions.

By turning vast amounts of data into actionable improvement, we continue to improve the care of high-risk newborns and find better ways to treat infants and their families in a more efficient and effective continuum of care.