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Newborn Screening

Timeliness is critical to prevent “deadly delays” in newborn screening (NBS), because babies with several serious “time-critical” metabolic disorders may die in the first weeks of life. The Milwaukee Journal Sentinel (MJS) showed that these “deadly delays” included hospitals “batching” samples over days before shipping them to the state screening laboratory, and closing laboratories on weekends and holidays.

Two babies in Colorado with MCAD deficiency tragically illustrate the impact of these delays. Noah Wilkerson, who was born on Friday and whose NBS sample was drawn on Saturday morning, died on Tuesday. The state lab was closed on the weekend and the results did not come back until Wednesday. Another Colorado baby with MCAD deficiency lives without disability, because he was born on Tuesday and his results came back on Friday so his treatment got started right away

A baby in Utah with MCAD deficiency may owe her life to the visibility that this series gave to transit times. Three days before she was born, the state changed from the U.S. Mail to an overnight carrier for rural hospitals. As a result, her birth hospital’s transit time, which had been five days or more for half of the samples, went to one day. Her results were available to her physicians in 5 days and she is healthy.

The SACHDNC voted in favor of the following timeline on February 12-13, 2015 for disorders for which results are time-critical, such as fatty acid oxidation, organic acid and urea cycle disorders:

  • Sample collected at the appropriate time and before 48 hours of age
  • Transit time to laboratory – 24 hours
  • Sample testing and results reported – 48 hours

Therefore, for these disorders that are life-threatening in the first weeks of life, results should be reported by 5 days of life. For all other disorders, such as PKU and hypothyroidism, the SACHDNC recommended that results be reported by 7 days of life.

The March of Dimes developed the NBS Quality Awards to encourage state health officials to reduce “deadly delays” in sample transit from the birth hospital to the state laboratory. These awards are being administered in collaboration with the Association of State and Territorial Health Officials with the goal of achieving full transparency for the public and transit times of 24 hours. These policies and practices will improve the public’s knowledge of the performance of their planned birthing hospital. Will Humble, MPH, Arizona Department of Health Services Director, was the first state health official to receive a NBS Quality Award in September 2014.

Nurses play critical roles in assuring that an adequate sample is collected in the nursery to prevent the need for a later second specimen and knowing the standard operating procedures for sample transit. Both of these approaches prevent “deadly delays.” The March of Dimes has developed a free access comprehensive article on NBS. The article empowers nurses to be strong advocates in NBS by providing an in depth understanding of the NBS system and showing how nurses can facilitate a “culture of safety” for NBS. Nurses are critical to preventing missed and delayed diagnoses, and the associated preventable mortality or life-long disability. For more in-depth information, read the NBS CNE article.
 


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See our catalog for CNE materials to help improve the health of mothers and babies.

Research breakthroughs

From the PKU test to surfactant and nitric oxide therapies, March of Dimes funded research is saving the lives of thousands of babies.

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