Emily Stanley of Finksburg calls her son, Weston, a "fighter." On the day Weston was born, Stanley and her partner, Logan Summers, had no idea his delivery would end with a life-threatening emergency that would lead to necessary long-term care.
Weston was born at a local hospital in September 2024 with a nuchal cord — his umbilical cord was wrapped around his neck twice, and he wasn't breathing. His care team was soon able to help his breathing, but his Apgar scores — an assessment of a newborn's health at one and five minutes after birth — were low. Doctors were concerned that he might have hypoxic-ischemic encephalopathy (HIE), a type of brain injury that happens when the brain experiences a decrease in oxygen or blood flow.
Weston was immediately transferred to Johns Hopkins Children's Center and its Level IV neonatal intensive care unit, which provides the highest level of care for critically ill and premature newborns. On the way there in a Maryland Regional Neonatal Transport Program ambulance, which is co-operated by the Children's Center, he was started on therapeutic hypothermia — a treatment he continued at the Children's Center.
Frances Northington, M.D., and Raul Chavez-Valdez, M.D., co-directors of the Neurosciences Intensive Care Nursery (NICN) at the Children's Center, are leading researchers in the field of HIE and therapeutic hypothermia, which is the only U.S. Food and Drug Administration-approved treatment for HIE in newborns. With therapeutic hypothermia, the body temperature is cooled to between 33 and 34 degrees Celsius to prevent further damage after an injury, such as a brain injury, and long-term health issues.
"Currently, when a newborn develops HIE, therapeutic hypothermia is the standard of care; however, there are no indicators to identify whether more needs to be done to prevent the newborn from sustaining lifelong damage," Chavez-Valdez says.
Chavez-Valdez and Northington's research hopes to change this. "The goals of our research are to develop biomarkers and potentially a blood test that could identify how well an infant is going to respond to therapeutic hypothermia," Northington says. "Ultimately, our aim is to determine which infants are going to need additional treatments to help them have the best outcomes."
After doctors at the Children's Center evaluated Weston and an MRI showed areas of brain damage, he was diagnosed with HIE. With therapeutic hypothermia at the Children's Center, his condition gradually improved.
Chavez-Valdez approached the family about enrolling Weston in their National Institutes of Health-funded studies. "There was no doubt that we were going to say yes," Stanley recalls. "Cooling therapy hasn't been around for long, and that all contributed to our son getting better. Maybe this could help another family in the future."
Following three days of therapeutic hypothermia, Weston's condition improved. He was gradually stopped from sedation, began eating on his own, and was weaned off oxygen. Members of the NICN team closely monitored him for the potential development of seizures, imaging progression and his overall developmental progress. Weston was able to leave the hospital eight days later.
Weston is now one year old, and loves rolling around in his walker, playing peek-a-boo, singing songs and other activities. He is crawling, and on the verge of walking. Stanley says Weston's doctors feel he has a minor delay with some of his gross motor skills, and is in physical therapy to help. His speech, on the other hand, is advanced for his age. He already has a wide range of vocabulary, and can say "mama," "dada," "all done," "bye-bye" and much more.
He was recently diagnosed with a benign seizure disorder, which children generally outgrow. He has routine checkups with pediatric epileptologist Babitha Haridas, M.B.B.S., who says Weston's seizures have been under control with a single anti-seizure medication.
Summers now calls his son "Wild West," because of all of the hurdles he has overcome in his short lifetime. He and Stanley are grateful for the studies that helped Weston's care, and hope that Weston's participation in research will help future patients.
"Without the studies, without the research, without Johns Hopkins, I don't know where we would be today," Stanley says.
