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Parents of Infants and Children with Kernicterus

Journal of Perinatology volume 25, pages 227–228 (2005)Cite this article

Parents of Infants and Children with Kernicterus was founded in October 2000. It is a nonprofit organization of a small group of mothers of children with kernicterus, who united to share their lessons in caring for their infants and to help prevent future cases of kernicterus by partnering with the healthcare system. Since its founding, PICK has expanded its membership and developed strong partnerships with federal and nonfederal organizations related to healthcare.

In September 2000, as the mother of a son with kernicterus, I was asked to testify at the First National Summit on Patient Safety and Medical Errors organized by the Agency for Healthcare Policy and Research (Now, Agency for Healthcare Research and Quality Assessment, AHRQ). In response to my testimony, USA Today featured an article on kernicterus, which resulted in several families of children with kernicterus finding one another. We then met at a satellite meeting held prior to the Annual Meeting of the American Academy of Pediatrics (AAP) in October 2000 and attended the screening of a video-documentary on kernicterus developed by the researchers at Pennsylvania Hospital, who had begun a Kernicterus Registry.1 The parents attending this meeting felt that more should be done by the healthcare organizations, as well as interested groups to help protect newborns from kernicterus.

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References

  1. Bhutani VK, Johnson LH . Kernicterus: lessons for the future from a current tragedy. NeoReviews 2003;4:e30–e32.

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  2. JCAHO Sentinel Event Alert: Kernicterus Threatens Healthy Babies. www.JACHO.org.Issue 18, April 2001.

  3. Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities. Kernicterus Prevention and Research: http://www.cdc.gov/ncbddd/dd/kernres.htm.

  4. PICK website: http://www.pickonline.org.

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Authors and Affiliations

  1. Parents of Infants and Children with Kernicterus (PICK), Boise, ID, USA

    Susan E Sheridan MBA, MIM

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  1. Susan E Sheridan MBA, MIM
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Presented in part at the NICHD Conference, Research on Prevention of Bilirubin-Induced Brain Injury and Kernicterus-From Bench to Bedside, at Bethesda, MD, USA, June 2003.

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Sheridan, S. Parents of Infants and Children with Kernicterus. J Perinatol 25, 227–228 (2005). https://doi.org/10.1038/sj.jp.7211244

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