PORTLAND, Ore. — A 6-week-old boy is fighting for his life inside OHSU Doernbecher’s pediatric intensive care unit after being diagnosed with two rare diseases. According to his team of doctors, this combination is unprecedented.
Jack Arneson, born Jan. 26, has both Ebstein’s anomaly, a congenital heart defect, and Sotos syndrome, a rare genetic disorder. Each condition is uncommon on its own, but together they present a medical challenge OHSU doctors say they have not encountered before.
“Jack is an incredibly special baby,” said Dr. Laura Miller-Smith, division chief of pediatric critical care medicine at OHSU, “Jack, unfortunately, has two very complex and rare diagnoses.”…