Miles to go: From Mississippi to Boston for life-saving care

Whether he’s riding with his family on their all-terrain vehicle (ATV) at home in Mississippi, learning how to fish or playing with his cousins, Ethan Claborn is happiest when he’s outdoors. Simple things like a blade of grass or drop of rain are even more special for this almost four-year-old, considering he spent the first year of his life within hospital walls. Ethan’s parents, Holly and Gary, knew even before he was born that he would face several health challenges. But it still felt like a shock when, not long after birth, he was rushed into surgery to treat an intestinal blockage. Diagnosed with ileal atresia, a defect in which part of the intestine doesn’t form correctly, Ethan was unable to absorb nutrients properly, putting him at risk for malnutrition. Children with this condition often need to receive nutrients intravenously — but long-term IV feeding, also known as total parenteral nutrition (TPN), can lead to liver injury. The Claborns endured a long five months at their local hospital’s neonatal intensive care unit (NICU), where they experienced the stark reality of life with a very sick infant: They couldn’t spend the night with their new baby, let alone bring him home. Worse, Ethan remained seriously ill, unable to gain weight or thrive. ‘A long shot’ One night, after another exhausting day at the NICU, Holly was watching a TV news program when she saw a segment spotlighting a potentially lifesaving new treatment for liver disease in...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories Center for Advanced Intestinal Rehabilitation Dr. Biren Modi Dr. Mark Puder ileal atresia Omegaven total parenteral nutrition Source Type: news