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Ed Yeates ReportingThe State of Utah has been given an "F" in its failure to test newborns for a life threatening disease. The March of Dimes passed out the indictment, joining pediatricians who believe ALL newborns should get the test.
Brian Rands was tested for cystic fibrosis as a newborn only because his brother already had the disease. But Taylor, who got it first, was not diagnosed until he was nine months old.
Four-year old Riley Davenport is another boy that was born with cystic fibrosis, but the diagnosis was not made until he was four months old. Riley was the last of six children in his family and the only one who ended up with cystic fibrosis, but doctors didn't know that when he was born.
Jill Davenport, Riley's Mother: "When your child is undiagnosed with something, it is the not knowing that is scary. And especially when his potassium and sodium levels were so out of this world and there were times when he appeared to stop breathing."
Barbara Chatfield, M.D., Pediatric Pulmonologist: "And he presented with profound protein calorie malnutrition which is often seen in third world countries."
Dr. Barbara Chatfield and researcher Sue Griffiths at Primary Children's Hospital say had Riley been tested for cystic fibrosis as a newborn, he would have been given pancreatic enzymes allowing him to absorb foods, to continue breast feeding, and to grow normally.
Dr. Barbara Chatfield: "We have looked back at our new diagnoses and if we only screened for the one most common mutation known to result in C.F. we would have caught 93 percent of them off of newborn screening."
Most states now require C.F. testing for all newborns. But among the fifteen states that don't, Utah is on the failing list.
Jill Davenport: "There are certain tests that children go through or babies - that are less common than a cystic fibrosis child - so why not have that be an automatic test. I mean it just boggles my mind."
Utah alone diagnoses 20 to 25 children with cystic fibrosis every year. The disease now occurs in every two to three thousand births.
