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States stress newborn screening for home births: Initiatives emphasize education about the importance of bloodspot tests, hearing screens
Article first published online: 19 NOV 2013
DOI: 10.1002/ajmg.a.36350
© 2013 Wiley Periodicals, Inc.
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Two states—Michigan and Minnesota— have boosted their efforts to increase newborn screening (NBS) of babies born at home.
Typically, bloodspots from home births are more likely to be collected late (after 48 hours of life) and are slower to arrive in a state public health laboratory for testing compared with hospital births.
This concerns public health officials because the duration of time from birth to treatment initiation is critical for detecting several disorders in the newborn screening panel, and failure to obtain a screen in a timely manner can have devastating consequences.
Michigan Efforts
In Michigan, the state's NBS program is working with midwives, local health departments, and the public to identify and address barriers to screening within the homebirth community. At the same time, screening advocates are ramping up efforts to make sure both parents and obstetricians are aware of NBS and understand its importance.
Although the number of planned homebirth deliveries comprises less than 1% of all Michigan births, they often occur in the Amish and Mennonite populations, which have a higher incidence of several heritable disorders.
While the NBS rate is 99.6% in the general population of Michigan births, only about 65% of infants born at home receive NBS, says Lois Turbett, RN, NBS, a Follow-up Nurse Consultant at the Michigan Department of Community Health (MDCH).
With funding provided by a grant from the 2013 Baby's First Test Challenge Award, MDCH recently held training seminars in collecting an NBS specimen and conducting hearing screens and pulse oximetry screening for critical congenital heart disease (CCHD), a test recently added to the state's NBS panel effective April 1, 2014, Ms. Turbett notes.
Meanwhile, MDCH is reaching out to obstetricians to make sure they were aware of informational pamphlets for patients about NBS, important uses for bloodspots and parents' options, and the state's biobank for residual bloodspots. That effort generated many requests for the pamphlets, says Janice Bach, MS, CGC Manager, Genomic and Genetic Disorders Section of MDCH.
Figure 1. Babies born at home are less likely than hospital-delivered babies to get newborn screening tests within 48 hours of birth. Kati Molin \Shutterstock.com
Minnesota Initiative
With funding from a federal grant, the Minnesota NBS program has partnered with the Minnesota Council of Certified Professional Midwives to promote hearing screening for babies born outside of hospitals, says Patti Constant, MPH, Communication and Education Supervisor at the Minnesota Department of Health's Newborn Screening Program. Additionally, the state program created and promoted prenatal educational material on NBS, supplying it to obstetricians and other prenatal care providers and educators.
More Obstetrician Education
Getting NBS information to obstetricians and parents before birth is crucial, says Nancy Rose, MD, Chair of the American Congress of Obstetricians and Gynecologists' (ACOG) Committee on Genetics, Director of Reproductive Genetics at Intermountain Healthcare, and Professor of Obstetrics and Gynecology at University of Utah in Salt Lake City.
“Pregnancy is a time when patients should hear about newborn screening, so we want to help both doctors and patients with information about what happens with newborn screening as well as to explain what positive results mean,” Dr. Rose explains. “Obstetricians have to set the scene.”
“For a while obstetricians said 'it's not our job, it's for pediatricians,” adds Ms. Constant. “Not everyone understood the benefits to doing this education at first. Also, it's challenging for obstetricians to educate patients about NBS because there is so much other information they must give during the prenatal period.”
Because NBS can be an intimidating topic for obstetricians to discuss, ACOG focuses on developing educational materials that are easily read by both doctors and patients, and also recommends that obstetric care providers make NBS information available to patients through brochures, electronic sources, and discussion during prenatal visits, Dr. Rose says.
Communication Is Crucial
Even though NBS is such an important part of public health, some factions of the public no longer assume it benefits children and families, says Natasha Bonhomme, Vice President of Strategic Development at Genetic Alliance in Washington, D.C.
Bonhomme, who launched the educational website, Baby's First Test, contends that ongoing public and provider education about newborn screening is crucial, but outreach efforts are difficult to maintain because they usually rely on grants. “You can't do education for three years and stop,” Bonhomme emphasizes. “People need to hear the information over and over. There's a difference between exposing people to information and them actually learning it.”
She urges genetics professionals to speak about the importance of NBS beyond the genetics community, which is well aware of its importance.
Ms. Constant agrees: “Talk to the wider community about how NBS has made a difference,” she urges. “Newborn screening is simple and easy, and it saves lives. That's pretty huge.”
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