[HTML1] Newborn screening is a vital public health program that has been called one of the most significant, lifesaving and important U.S. public health programs of the past 50 years. Shortly after conducting the interview on this topic for Life Love & Health: Special Edition, Executive Producer Christopher Springmann learned that, perhaps not so coincidentally, the Centers for Disease Control and Prevention listed advances in maternal and infant health as one of the past decade’s ten great public health achievements in its Morbidity and Mortality Weekly Report.
The guests on today’s show — Judith Benkendorf of the American College of Medical Genetics, Kelly Rosso-Leight of the CARES Foundation and the coordinator of the Preserving the Future of Newborn Screening Coalition, pediatrician Dr. Tracy Trotter, and parent activist Korissa Olson — are in complete agreement with the CDC report. They will tell us how newborn screening saves lives every day. Through early screening, diagnosis and treatment health care providers can now prevent the dire consequences of many treatable conditions. With the current expansion of newborn screening panels nationwide, it is estimated that about 10,000 of the 4.1 million babies born each year in the United States will be identified with one of the conditions for which early treatment will have a significant impact on the child’s life and long-term health. Advances in technology have made it possible, feasible and cost-effective to test newborns for a number of extremely serious, disabling or deadly conditions with a simple gathering of a drop or two of blood from the newborn’s heel.
“Newborn screening is giving all newborns a chance for a normal life,” says Dr. Trotter. “It can’t be stated too strongly or too many times that this gives us a chance to be proactive, be on the prevention side rather than reacting to crisis.”
“When we talk about newborn screening as a program,” explains Ms. Benkendorf, who is a genetic counselor, “it is really a process that goes from birth and that heel stick through the analysis of the blood sample in the laboratory to the reporting out of a positive result, which means finding those newborns as quickly as possible and getting them into their primary care providers for follow-up, diagnosis, management and treatment and then lifelong care. So this program really is a process with many, many steps. I think one of the most important things for parents to know is that when doing screening tests, we are looking at large populations of people, and casting a very wide net. We are going to pick up in that net more people than are actually affected by the condition. It’s critical that a screen positive test is followed up immediately, but not every baby with a screen positive test actually has a diagnosis of one of the disorders in the newborn screening panel.”
For this reason and many more, organizations such as ACMG believe that all expectant parents should be versed in the nuances and, more importantly, the lifesaving benefits of newborn screening.
Segment A (0:00 – 11:00)
Life Love & Health: Special Edition Executive Producer Christopher Springmann speaks with Judith Benkendorf, Kelly Rosso-Leight and Dr. Tracy Trotter about what newborn screening is and why it’s Important.
Segment B (11:01 – 22:00)
Judith Benkendorf, Kelly Rosso-Leight, and Dr. Tracy Trotter on early diagnosis of congenital diseases
Segment C (22:01 – 33:00)
Grateful mother Korissa Olson joins Judith Benkendorf, Kelly Rosso-Leight and Dr. Tracy Trotter to share her story of newborn screening.
Segment D (33:01 – 44:00)
Judith Benkendorf, Kelly Rosso-Leight, Dr. Tracy Trotter and Korissa Olson on blood spot testing
Segment E (44:01 – 55:00)
Judith Benkendorf, Kelly Rosso-Leight, Dr. Tracy Trotter and Korissa Olson on empowering new parents
More about Judith Benkendorf
Judith Benkendorf is a board certified genetic counselor, Special Assistant to the Executive Director at the American College of Medical Genetics and Associate Project Director of the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives.
More about Kelly Rosso Leight
Kelly Rosso Leight is a founder of the CARES Foundation and the coordinator of the Preserving the Future of Newborn Screening Coalition.
More about Dr. Tracy Trotter
Dr. Tracy Trotter is a pediatrician in private practice with an interest in genetics.
More about Korissa Olson
As a healthy expectant mother in Minnesota, whose preference is for less medical intervention, Korissa Olson declined newborn screening upon the birth of her son Everett. It was not until a nurse clearly delineated the benefits that she changed her mind, only to learn that Everett is affected with galactosemia, one of the conditions in the universal newborn screening panel. This knowledge has not only been life saving to her robust 3-year old, but it was also life giving, as his diagnosis was known when the first signs of the condition showed up—symptoms so general that he could have received treatment that would have made him sicker. With this experience, she has become a strong advocate for universal newborn screening.
More about the American College of Medical Genetics and ACMG Foundation
Founded in 1991, the American College of Medical Genetics is the national non-profit professional organization that advances the practice of medical genetics by providing education, resources and a voice for physician geneticists, biochemical, clinical, cytogenetic, medical and molecular geneticists, genetic counselors and other healthcare professionals committed to the practice of medical genetics. ACMG’s website offers a variety of resources including Policy Statements, Practice Guidelines, Educational Resources, and a Medical Geneticist Locator. The educational and public health programs of the American College of Medical Genetics are dependent upon grants, contracts and charitable gifts from corporations, foundations, and individuals. The American College of Medical Genetics Foundation is a 501(c)(3) not-for-profit organization dedicated to funding the College’s diverse efforts to translate genes into health. The ACMG Foundation is dedicated to Better Health Through Genetics™.
More about the HRSA Genetics Collaboratives
The seven HRSA/MCHB-funded Genetics Collaboratives and their National Coordinating Center (NCC) are working to improve access to local genetic and newborn screening services, information, and resources for individuals and families with heritable disorders. A major component of the NCC/Genetics Collaboratives system involves using a variety of approaches to link primary care providers, geneticists and other specialist providers, and public health services into a comprehensive medical home that meets all the needs of individuals and families with heritable conditions. Activities at all levels engage consumers and families, with new opportunities for partnerships continually emerging. Its website is NCCRCG.org. The NCC is funded by U22MC03957, awarded as a cooperative agreement between the Maternal and Child Health Bureau/Health Resources and Services Administration, Genetic Services Branch, and the American College of Medical Genetics.
© 2011 by On the Path Productions, LLC. All rights reserved.
Recent Comments