About Us

About Us – Our Beginnings

Kernicterus is a preventable neurologic disorder caused by newborn jaundice that can result in cerebral palsy, auditory processing problems (AN), gaze and vision abnormalities, and dental enamel hypoplasia. Newborn jaundice affects 60% of newborns in the United States each year and is the number one reason for hospital readmission during the first week of life.
In the last ten to fifteen years, changes such as relaxed jaundice management guidelines, shortened hospital stays and reduced concern about jaundice in general have led to an increase in cases of excessive jaundice and acute and chronic kernicterus.
The long-term effects of excessive jaundice on the newborn brain can range from subtle (clumsiness, minor fine-motor deficits and sometimes slight AN) to severe (quadriplegia, total hearing loss, non-verbal).
A few weeks after the severe jaundice incident, parents are typically able to identify abnormal newborn behaviors including poor feeding, irritability, sleep difficulty and muscle tone fluctuations.
In addition, several secondary medical conditions are associated with kernicterus: severe reflux, sleep disturbances, respiratory infections and chronic constipation.

How P.I.C.K. was Formed

PICK was developed in late 2000, by a group of mothers of children with severe cerebral palsy resulting from kernicterus, a condition caused by excessive bilirubin levels in newborns.

Media coverage in September 2000, following the testimony of Susan Sheridan (PICK co-founder) at an Agency for Healthcare Quality & Research summit on patient safety, facilitated the networking of seven PICK moms.

They quickly realized that their children’s injuries were not as rare as the medical and public health communities estimated. PICK mobilized rapidly to create awareness about kernicterus and strategies for preventing this easily preventable patient injury.

Progress and Partnership

  • Organized the first system-wide consumer/healthcare workshop “Strategies for a System-wide Change in the Management of Neonatal Hyperbilirubinemia to Prevent Kernicterus” in February 2001. Participants included:
    • Joint Commission on Accreditation of Healthcare Organizations (JCAHO)
    • Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities (CDC/NCBDDD)
    • National Institutes of Health (NIH)
    • American Academy of Pediatrics (AAP)
    • Boston Children’s Hospital, Harvard School of Public Health
    • Maternal Child Health Bureau
    • Office of the Assistant Secretary for Planning and Evaluation
    • Nationally renowned researchers in the area of jaundice management and kernicterus.
  • Advocated and worked with JCAHO to issue a May 2001 Sentinel Event Alert on kernicterus prevention, the first purely consumer driven alert issued by JCAHO.
  • Collaborated with the CDC for the June 2001 report on kernicterus in the Morbidity/Mortality Weekly Report. CDC also presented information at a Congressional briefing on kernicterus in July of 2001. CDC issued announcement in MMWR on the updated jaundice management guidelines in 2004.
  • Advocated successfully for the classification of kernicterus as a “Never Event” by the National Quality Forum.
  • Honored at the national Patient Safety Partnership Symposium as a success story of partnership between consumer and the- healthcare system to initiate system-wide improvements.
  • Initiated a parent-driven research study on cases of kernicterus, including the factors that resulted in severe hyperbilirubinemia and the clinical signs of kernicterus.
  • Received grant funding from the CDC/NCBDDD in collaboration with the University of Pennsylvania for public education, prevention and surveillance of severe hyperbilirubinemia.
  • PICK educational video was filmed in Boston. State of Minnesota tracking “Never Events” including hyperbilrubinemia.
  • Coordinated the formation of the Kernicterus Prevention Partnership Campaign (KPPC). Goals, objectives and members are described later in this report.
  • Received funding from the Health Resources Services Administration, Maternal and Child Health Bureau for the KPPC.
  • PICK co-founder Susan Sheridan invited to speak at the World Health Organization in Geneva during which the PICK education/prevention video was shown in 2004 and serves on Patients for Patient Safety initiative.
  • In 2009, Sheridan was named to Modern Heatlhcare’s list of Top 25 Women in Healthcare.
  • Support for Families and Individuals with Kernicterus
    • In 2011, the Newborn Jaundice Listserve has nearly 500 members from around the world and provides a rich source of support for families and individuals with kernicterus.
    • Sponsored a family conference in June 2002 in collaboration with Children’s Hospital in Richmond, VA and Virginia Commonwealth University Medical College of Virginia with 150 attendees including scientists, medical experts, and 25 families with children with kernicterus.
    • Research and Family Conference in October of 2005 in collaboration with Civitan International Research Center.  Brought together prominent researchers to create a plan for promising treatment and research for children and adults with kernicterus and greater understanding of the pathophysiology of the disorder.

  • Future plans include regional family gatherings and a family conference in 2012.