Family reflections: research gives back childhood: a family’s experience with very early onset inflammatory bowel disease

We will never forget the day when we knew something was wrong with our son. One afternoon, our son experienced a bought of distress and uncontrollable crying. A few days after his agony started, while changing his diaper, we saw blood. We rushed him to his pediatrician and then a pediatric gastroenterologist. After diet changes, countless tests, and many failed interventions, our son was diagnosed with an extremely rare disease called Very Early Onset Inflammatory Bowel Disease (VEO-IBD). As parents already struggling with the normal challenges of raising a newborn, we were thoroughly overwhelmed managing our son’s disease in a world that seemed to know very little about it.

Very Early Onset Inflammatory Bowel Disease is so rare and individualized that no standard of care yet exists, and almost none of the interventions are approved for infants. After eliminating all dairy, prematurely ending breastfeeding, and moving exclusively to a prescription formula, we tried and failed multiple classes of medications, hoping each time that this medication would be the one that would ease our son’s suffering. Doctors are only now building a history of successful interventions to draw from, so treatment options come from very small studies from Very Early Onset Inflammatory Bowel Disease researchers and educated guesses. Treatment options generally ramp up in aggressiveness, which is hard enough for parents of a miserably sick infant to process and decide. Once these interventions fail, drug costs and insurance approval become major hurdles. This process of trial-and-error in treating Very Early Onset Inflammatory Bowel Disease patients is a nightmare. On a weekly or monthly basis, parents must make life-altering decisions with very little data for a patient too young to advocate for themselves.