When a baby who is born prematurely has been in the hospital for a long time, being able to go home even a few days earlier than anticipated can matter a great deal to a family. A condition called apnea of prematurity is often the last thing standing in the way before their families can take them home.

Because premature babies’ brains are still developing, the brain sometimes “forgets” to send the message to the lungs to breathe. So, their breathing may stop for 10 seconds or longer, anytime during the day or night. This is called apnea of prematurity. Physicians use caffeine as a treatment to help stimulate the part of the baby’s brain that controls breathing.

Physicians and data scientists at Johns Hopkins All Children’s Hospital have been studying apnea of prematurity using a data-driven approach. The team is using data collected in the neonatal intensive care unit (NICU) to confirm and build upon existing knowledge about the condition.

Johns Hopkins All Children’s has been collecting high-frequency data in intensive care units for many years, and continued advances in technology mean that data can be collected and stored from an individual patient continuously at the highest resolution possible.

“With higher-frequency, more precise data, we are able to work toward helping to develop precision medicine therapies for children,” says Luis Ahumada, MSCS, Ph.D., director of the hospital’s Machine Learning and Predictive Analytics Unit. Precision medicine therapies are those in which treatments are increasingly tailored to the individual patient.

In the case of apnea of prematurity, providers have used caffeine as a treatment for at least three decades. It is given as a medication first intravenously and then orally as babies grow a little bigger. Caffeine helps to stimulate the brain, so it sends the right signals to tell the lungs to breathe.

Left untreated, babies would have a higher number of apnea events, which would impact their oxygen levels and could adversely affect overall health and brain development, explains Prem Fort, M.D., neonatologist in the Johns Hopkins All Children’s Maternal, Fetal and Neonatal Institute. He is also a co-lead of the institute’s Research and Quality Network and co-chair of its research council. Babies are given the caffeine once or twice a day, which allows their bodies to maintain the dose needed for their brains to be properly stimulated.

Previous clinical and observational studies have shown that babies with a younger gestational age will experience more apnea events, and that the number of events decreases over time as they grow.

Through data collection and analysis, the Johns Hopkins All Children’s team has been able to confirm this and is adding to the body of work on this condition, by also understanding the contribution to apnea of prematurity that is made by the length of time that has elapsed since the day of birth. This helps contribute to a clearer picture of the condition for those in the medical field and sets the stage for future studies.

A future goal is to build a predictive model of how many instances of apnea of prematurity providers can expect babies of certain gestational ages, and certain day/weeks of age post-birth, to experience. With further study, this could, in the future, enable providers to more precisely tailor the dosage of caffeine during the first weeks and months of life to each baby who is born premature — a personalized approach to medicine.

“We’re not there yet,” Fort says, “but this is a step in the right direction toward a more individualized approach.”

Fort and Ahumada gave a presentation on this work at the annual State of Science event hosted by the St. Petersburg Innovation District and held virtually this past fall. The event showcases innovations taking place in the areas of science, technology, engineering and art within the district. Fort and Ahumada’s presentation highlighted an example of the ways clinical investigators and data scientists at Johns Hopkins All Children’s are combining their experience to combat pediatric conditions from different angles and with synergistic areas of expertise.

“Collaborating and bringing together different expertise and perspectives enhances the way we can leverage data to answer important clinical questions and ultimately improve outcomes for children,” Fort says.