New test is saving Utah babies' lives by earlier detection

Newborns • SCID can lead to serious infection.

Steve Griffin | The Salt Lake Tribune

A sample of the Utah Department of Health newborn screening form that tests the 53,000 babies born annually for 38 disorders. Jody Bell and Logan Hauenstein's seven-week-old daughter, Calla, was the first child in Utah to be diagnosed, using the screening, with SCID. Babies with SCID are not able to fight infections and often die. Calla was diagnosed very early and will soon have a bone marrow transplant that will increase her survival rate to over 95 percent. Currently, 23 states have adopted the T-cell receptor excision circle (TREC) assay as part of their routine newborn screening programs. Utah began screening for SCID on July 1, 2013 and has screened approximately 61,000 newborns for SCID to date. The prevalence of SCID was thought to be 1:100,000; however, through newborn screening, more children are being diagnosed and the prevalence appears to be closer to 1:50,000. Bell and Hauenstein were at the Department of Health CSCHN Building in Salt Lake City, Thursday, October 23, 2014, for a press conference.

Steve Griffin | The Salt Lake Tribune

Jody Bell and Logan Hauenstein talk to media members about their seven-week-old daughter, Calla, who was the first child in Utah to be diagnosed with SCID using the Utah Health Department's routine newborn screening test. Babies with SCID are not able to fight infections and often die. Calla was diagnosed very early and will soon have a bone marrow transplant that will increase her survival rate to over 95 percent. Currently, 23 states have adopted the T-cell receptor excision circle (TREC) assay as part of their routine newborn screening programs. Utah began screening for SCID on July 1, 2013 and has screened approximately 61,000 newborns for SCID to date. The prevalence of SCID was thought to be 1:100,000; however, through newborn screening, more children are being diagnosed and the prevalence appears to be closer to 1:50,000. Bell and Hauenstein were at the Department of Health CSCHN Building in Salt Lake City, Thursday, October 23, 2014, for a press conference.

Steve Griffin | The Salt Lake Tribune

Jody Bell and Logan Hauenstein talk to media members about their seven-week-old daughter, Calla, who was the first child in Utah to be diagnosed with SCID using the Utah Health Department's routine newborn screening test. Babies with SCID are not able to fight infections and often die. Calla was diagnosed very early and will soon have a bone marrow transplant that will increase her survival rate to over 95 percent. Currently, 23 states have adopted the T-cell receptor excision circle (TREC) assay as part of their routine newborn screening programs. Utah began screening for SCID on July 1, 2013 and has screened approximately 61,000 newborns for SCID to date. The prevalence of SCID was thought to be 1:100,000; however, through newborn screening, more children are being diagnosed and the prevalence appears to be closer to 1:50,000. Bell and Hauenstein were at the Department of Health CSCHN Building in Salt Lake City, Thursday, October 23, 2014, for a press conference.

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Steve Griffin | The Salt Lake Tribune A sample of the Utah Department of Health newborn screening form that tests the 53,000 babies born annually for 38 disorders. Jody Bell and Logan Hauenstein's seven-week-old daughter, Calla, was the first child in Utah to be diagnosed, using the screening, with SCID. Babies with SCID are not able to fight infections and often die. Calla was diagnosed very early and will soon have a bone marrow transplant that will increase her survival rate to over 95 percent. Currently, 23 states have adopted the T-cell receptor excision circle (TREC) assay as part of their routine newborn screening programs. Utah began screening for SCID on July 1, 2013 and has screened approximately 61,000 newborns for SCID to date. The prevalence of SCID was thought to be 1:100,000; however, through newborn screening, more children are being diagnosed and the prevalence appears to be closer to 1:50,000. Bell and Hauenstein were at the Department of Health CSCHN Building in Salt Lake City, Thursday, October 23, 2014, for a press conference. Steve Griffin | The Salt Lake Tribune Jody Bell and Logan Hauenstein talk to media members about their seven-week-old daughter, Calla, who was the first child in Utah to be diagnosed with SCID using the Utah Health Department's routine newborn screening test. Babies with SCID are not able to fight infections and often die. Calla was diagnosed very early and will soon have a bone marrow transplant that will increase her survival rate to over 95 percent. Currently, 23 states have adopted the T-cell receptor excision circle (TREC) assay as part of their routine newborn screening programs. Utah began screening for SCID on July 1, 2013 and has screened approximately 61,000 newborns for SCID to date. The prevalence of SCID was thought to be 1:100,000; however, through newborn screening, more children are being diagnosed and the prevalence appears to be closer to 1:50,000. Bell and Hauenstein were at the Department of Health CSCHN Building in Salt Lake City, Thursday, October 23, 2014, for a press conference. Steve Griffin | The Salt Lake Tribune Jody Bell and Logan Hauenstein talk to media members about their seven-week-old daughter, Calla, who was the first child in Utah to be diagnosed with SCID using the Utah Health Department's routine newborn screening test. Babies with SCID are not able to fight infections and often die. Calla was diagnosed very early and will soon have a bone marrow transplant that will increase her survival rate to over 95 percent. Currently, 23 states have adopted the T-cell receptor excision circle (TREC) assay as part of their routine newborn screening programs. Utah began screening for SCID on July 1, 2013 and has screened approximately 61,000 newborns for SCID to date. The prevalence of SCID was thought to be 1:100,000; however, through newborn screening, more children are being diagnosed and the prevalence appears to be closer to 1:50,000. Bell and Hauenstein were at the Department of Health CSCHN Building in Salt Lake City, Thursday, October 23, 2014, for a press conference.

By Kristen Moulton The Salt Lake Tribune

· October 23, 2014 8:29 pm

This is an archived article that was published on sltrib.com in 2014, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.

A disorder that makes it hard for newborns to fight infections is two times more prevalent among Utah infants than previously thought.

Utah health officials documented greater numbers of babies with Severe Combined Immunodeficiency (SCID) after doctors in the state started testing for the disorder in July 2013. It is now one of 38 disorders on Utah's Newborn Screening Panel, tests run with blood pricked from babies' heels, according to a Utah Department of Health news release.

A couple whose 7-week-old daughter was diagnosed with SCID during a newborn screening joined with health department officials Thursday to urge such screening tests.

Jody Bell and Logan Hauenstein's daughter Calla has been in isolation at Primary Children's Hospital in Salt Lake City since a few days after her birth. She's awaiting a bone marrow transplant, which can be a successful treatment if SCID is diagnosed early.

Babies with SCID can appear normal at birth, but can't fight infections because they lack T-cells and antibody immunity. They develop diarrhea and fail to thrive. Before the immune disorder was added to the panel of tests, babies often were not diagnosed until after they developed serious infections.

Utah is now one of 23 states testing for SCID, and has screened about 61,000 newborns since July 1, 2013.

The prevalence of the disorder was thought to be one in 100,000. Diagnoses so far, however, indicate it occurs in one of 50,000 Utah newborns, according to the health department.

kmoulton@sltrib.com

Twitter: @KristenMoulton