Exclusive | My infant son died of a rare disorder I wish his doctors had run this cheap test sooner

Jordan Kruse realized something was wrong with her newborn, Pruitt, hours after bringing him home from the hospital last year.“He started to refuse nursing,” Kruse, 32, told The Post.“You’re supposed to nurse [newborns] every two hours, so that was my first sign.”What followed is every new parent’s biggest fear — the South Dakota infant became extremely sick with a rare, inherited metabolic disorder and died at just 6 months old.As they approach the first anniversary of Pruitt’s death, the Kruse family is continuing to raise awareness about ornithine transcarbamylase (OTC) deficiency and pushing hospitals to prioritize early ammonia testing in symptomatic newborns in the hopes of preventing other devastating deaths.“Our hospital … changed their protocol,” Kruse said.

“That’s something I hope that other hospitals in our area and around the states can start.”Pruitt arrived on May 17, 2024, joining his two older brothers, Paxton and Pryor.Jordan — a schoolteacher like her husband, Chris — had quietly hoped for a girl.She eventually embraced the boy mom spirit.Her pregnancy was fairly uneventful — she was diagnosed with gestational diabetes, a common condition — and her delivery was unremarkable.The family was discharged two days later since things were “blissfully fine.” Disaster struck within hours.“Things drastically changed in that short amount of time home with him,” Jordan said.Failing to nurse was the first clue — then Pruitt started making weird grunting noises.It didn’t seem like he was in respiratory distress.

He just appeared uncomfortable.The Kruses brought him to the ER.A frenzied array of labs ensued.Doctors initially suspected a bacterial infection, but those tests kept coming back negative.Finally, after two excruciating days, the genetics team was consulted and an ammonia test was run.Pruitt registered a whopping 1,256 micromoles per liter — under 90 is considered normal for full-term infants.“Once ...