Discovering that your newborn has cystic fibrosis (CF) adds an extra layer of stress to parenthood. As one of the physicians who helped prepare the Cystic Fibrosis Newborn Screening Program at Riley at IU Health for its role in research, Michelle Howenstine, MD, says one of the most important lessons in her career was learning the best way to communicate with families in the earliest stages of their child’s CF diagnosis.
The natural sequence after getting the diagnosis from a primary care physician or pediatrician is to visit a website. When parents meet with the team for the first time, they are fearful, sleep-deprived and fraught with a sense of guilt for having transferred CF through their genetic makeup. “Their babies often look like a Gerber baby, but they’ve just been told that this beautiful child has an incurable, life-shortening disease,” says Howenstine, who specializes in pulmonology at Riley at IU Health.
As hard as it is to hear this diagnosis, Howenstine and the rest of her research team have a positive message from the start: early diagnosis and intervention can improve a child’s future health. They know this from decades of CF evidence gathered through unique partnerships like the one shared between Riley at IU Health and the Indiana University School of Medicine.
For the past three years, Howenstine and her colleagues have been part of a large, multi-site observational study organized by the University of Wisconsin and co-funded by the National Institutes of Health (NIH) and the Cystic Fibrosis Foundation. It evaluates how early feeding habits shape the risk of infection and influence growth and development in children with CF. Most children with CF also have pancreatic insufficiency, which affects how they absorb vitamins A, E, D and K. These fat-soluble vitamins aid development of the brain and the immune system.
“We’re trying to determine what the best feeding practices are and whether there are basic nutritional requirements that may be important,” she says. Families who participate agree to record height, weight and various feeding and nutrition habits, starting in infancy. Their children also have blood and sputum samples analyzed to gain a better understanding of their metabolic condition.
Because the study is observational and doesn’t attempt to influence feeding practices, it is an approachable way for families to get involved in clinical research and see its value. “Some parents get a real sense of relief or satisfaction from doing something that fights this disease,” Howenstine says.
Howenstine admits nutrition isn’t as exciting to most people as hearing about some of the new drugs that are keeping CF patients healthier, but the results of these feeding studies have been so revealing that the NIH is adding studies to examine how nutrition shapes children’s health over a longer period time.