June 30, 2004
Nancy Volino, Director of Communications, 312/596-4731
ILLINOIS IS ONE OF ONLY 21 STATES TO OFFER CORE NEWBORN SCREENING
TESTS;
MOST STILL FALL SHORT OF MARCH OF DIMES RECOMMENDATIONS
72 Babies' Lives Are Saved Two Years After Illinois Implements Expanded Newborn
Screening Legislation
Chicago - - Nearly all babies born in the United States undergo newborn screening tests for
genetic birth defects, however, the number and quality of these tests vary from state to state.
"These tests, done immediately after birth, may mean the difference between a healthy life or a
severe disability for a baby," said Dr. Jennifer Howse, president of the March of Dimes.
Disparities among states in health screening tests given at birth mean too many babies with
serious birth defects are not being diagnosed and treated in time.
On July 1, 2002 the state of Illinois implemented expanded newborn screening legislation.
Previously, the state required only six screens, however screens for 22 disorders were added with
this new legislation. Since the new legislation in 2002, Illinois has implemented screenings for 12
more disorders. Currently our state's newborns are screened for 34 disorders. According to the
Illinois Department of Public Health, in the two years since the expanded screenings have been in
place, at least 72 babies were identified for diseases that might have caused death or severe illness
without the additional screenings.
The metabolic disorders on the March of Dimes-recommended list for screening are:
phenylketonuria (PKU); congenital hypothyroidism; congenital adrenal hyperplasia (CAH);
biotinidase deficiency; maple syrup urine disease; galactosemia; homocystinuria; sickle cell
anemia; and medium-chain acetayl-CoA dehydrogenase (MCAD) deficiency. The March of
Dimes and the American Academy of Pediatrics also advise a test for hearing deficiency for all
newborns. Currently most states have approved screening for hearing deficiency, including
Illinois, but seven states still do not ensure that at least 90 percent of babies actually get tested,
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Add one.
the March of Dimes says.
For Kim and Erik Shambo of Charleston, Illinois, the fight for expanded newborn screening
was a personal one. Their son, Jacob Ryan Shambo, was born in 2001 with a serious birth defect and
lost his life at six days of age due to a congenital metabolic disorder that could have been diagnosed
through expanded newborn screening. Jacob’s parents started the Jacob Foundation to fight for
expanded newborn screening in Illinois. “My objective was to make sure this happens to no other
family. I wanted to save other families from what we went through,” said Kim Shambo.
The Shambo family worked closely with Senator Dale Righter (R, Mattoon) and March of
Dimes volunteers to raise awareness about expanded newborn screenings and to establish a strong
partnership with the Illinois Department of Public Health. “I enjoyed working with the March of
Dimes and the Shambo family to build support for Illinois to expand screenings provided to
newborns,” said Senator Righter.
The Illinois Department of Public Health was commended by the March of Dimes and the
Shambo family for implementing the expanded newborn screening legislation quickly and
efficiently. This should not go unrecognized since, seventy percent of babies in the U.S. are born
in states that still fail to carry out the nine core newborn screening tests recommended by the
March of Dimes as of 2004.
Erik and Kim have continued their fight with determination. They recently went to
Washington D.C. for "A Day on the Hill," sponsored by the First Candle/SIDS Organization.
They met with a number of U.S. Senators and representatives, urging their support not only for
the expansion of newborn screening but also mandatory parental notification, in which health care
providers would be required to notify parents of screening options that are available for their
child, in addition to those disorders screened for by their State Health Department. The Shambos
believe that "parents should be given the choice to decide whether they feel the screening is
appropriate for their family," instead of thinking "if I had only known."
The March of Dimes is the first national health organization to recommend that every
baby born in the U.S. receive, at a minimum, screening for the same core group of nine metabolic
disorders as well as hearing deficiency. All of these metabolic disorders can be successfully
managed or treated to prevent severe consequences, if diagnosed early.
Few parents realize that the extent of newborn testing depends entirely on the state in which
their baby is born. For infants affected with these nine metabolic disorders, the tests can mean
the difference between life and death, the March of Dimes says.
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Add two.
“Without the work of the Shambo family, Senator Righter, the March of Dimes volunteers
and the Illinois Department of Public Health, expanded newborn screenings would not have
become a reality for Illinois residents. In two years, their efforts have saved the lives of at least
72 babies from death or severe illness and 72 families from possibly losing a child,” said Gail
Wilson, Illinois State Director of the March of Dimes.
As for the remaining states, “Our state chapters and their partners have been working
closely with governors, state legislators, and health departments to increase access to these
important tests,” Dr. Howse says. “I’m encouraged to report today that since this time last year,
the number of states that test for the nine core metabolic disorders has risen from nine to 21."
In addition to Illinois, the following 20 states screen for the March of Dimes-recommended
list of metabolic disorders: Alaska, Connecticut, Hawaii, Idaho, Indiana, Iowa, Maine, Maryland,
Massachusetts, Mississippi, Nevada, New York, North Dakota, Oregon, Rhode Island, Tennessee,
Vermont, Virginia, Washington, and Wisconsin. These states account for about 1.3 million of the
approximately 4 million live births each year in the U.S. “This means that only about 32 percent
of babies are born in states that carry out the recommended screening,” Dr. Howse says.
Dr. Howse says the March of Dimes urges Congress to act and to appropriate $25 million
to fund Title 26 of the Children’s Health Act of 2000, to help improve and strengthen state
newborn screening programs.
Newborn screening is done by testing a few drops of blood, usually from a newborn’s
heel, before hospital discharge. If a result is positive, the infant will usually be re-tested and given
treatment as soon as possible, before becoming seriously ill from the disease.
To learn about the tests offered by your state, see the list at marchofdimes.com/nbs or
www.idph.state.il.us.
The March of Dimes is a national voluntary health agency whose mission is to improve
the health of babies by preventing birth defects and infant mortality. Founded in 1938, the March
of Dimes funds programs of research, community services, education, and advocacy to save
babies and in 2003 launched a five-year campaign to address the increasing rate of premature
birth. For more information, visit the March of Dimes Web site at marchofdimes.com or its
Spanish Web site at nacersano.org.
For free access to national, state and county-level statistics related to pregnancy and
maternal and infant health, visit PeriStats, an interactive data resource from the March of Dimes
at marchofdimes.com/Peristats.
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