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March of Dimes Applauds Sens. Dodd and DeWine for Introducing the Newborn Screening Saves Lives Act
Washington, D.C., May 15, 2003— The March of Dimes applauds Senators Christopher Dodd (D-Conn.) and Mike DeWine (R-Ohio) for introducing the Newborn Screening Saves Lives Act. “On behalf of more than 3 million volunteers and 1500 staff members of the March of Dimes, I commend Senators Dodd and DeWine for their continued leadership to ensure that no matter where a baby is born it will have access to the same newborn screenings in order to prevent serious birth defects,” said Dr. Jennifer L. 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, the March of Dimes says. “Parents are often unaware that, while nearly all babies born in the United States undergo newborn screening tests for genetic birth defects, the number and quality of these tests vary from state to state,” said Dr. Howse. “The grants that will be made available through this bill will help educate parents about newborn screenings.”
The March of Dimes is calling on Congress to strengthen state newborn screening programs by appropriating $25 million to begin the implementation of the heritable disorders (newborn screening) program at HRSA authorized in Title XXVI of the Children’s Health Act of 2000. This program is designed to help states improve their newborn screening programs; to support states’ in developing, evaluating, and acquiring innovative testing technologies; and to establish and improve programs to provide screening, counseling, testing and special services for newborns and children at risk for heritable disorders.The March of Dimes recommends that every baby born in the U.S. receive, at a minimum, the same core group of screening tests for metabolic disorders and hearing screening.
“These tests, done immediately after birth, may mean the difference between a healthy life or a severe disability for a baby,” Dr. Howse said. “Tragedy can sometimes be avoided by quickly identifying a problem and providing the appropriate medical treatment. The March of Dimes looks forward to working with Senators Dodd and DeWine to enact this critical legislation.”
Newborn Screening Tests Recommended by the March of Dimes
- Medium-Chain Acyl-Coa Dehydrogenase (MCAD) Deficiency
Incidence: 1 baby in 15,000
An inherited disorder of fatty-acid metabolism caused by the lack of an enzyme required to convert fat to energy. Seemingly well infants or children can suddenly develop seizures, respiratory failure, cardiac arrest, coma, and death. Identifying affected children before they become ill is vital to preventing a crisis and averting these consequences. Treatment includes steady food or glucose intake and avoidance of fasting.
- Phenylketonuria (PKU)
Incidence: 1 baby in 12,000
An inability to properly process the essential amino acid phenylalanine, which then accumulates and damages the brain. PKU can result in severe mental retardation unless detected soon after birth and treated with a special formula. Affected individuals must be kept on a low phenylalanine diet at least throughout childhood, adolescence, and for females, during pregnancy.
- Congenital Hypothyroidism
Incidence: 1 baby in 4,000
A thyroid hormone deficiency that severely retards both growth and brain development. If detected soon after birth, the condition can be treated with oral doses of thyroid hormone to permit normal development.
- Congenital Adrenal Hyperplasia (CAH)
Incidence: 1 baby in 5,000
CAH refers to a set of inherited disorders resulting from defects in the synthesis of hormones produced by the adrenal gland. Certain severe forms of CAH cause life-threatening salt loss from the body if undetected and untreated. Treatment includes salt replacement and hormone replacement.
- Biotinidase Deficiency
Incidence: 1 baby in 70,000
Biotinidase is the enzyme that recycles biotin, a crucial B vitamin. Biotinidase deficiency may cause serious complications, including frequent infections, uncoordinated movement, hearing loss, seizures, and mental retardation. Undiagnosed and untreated, the deficiency can lead to coma and death. If the condition is detected soon after birth, these problems can be prevented simply by giving the baby extra biotin.
- Maple Syrup Urine Disease
Incidence: 1 baby in 250,000
A rare inborn error of metabolism that is lethal if unrecognized and untreated. There is a wide spectrum of this condition from mild to severe. Affected babies appear normal at birth but soon begin to have neurological symptoms. It is unusual for severely affected babies to survive the first month, and those who do usually have irreversible mental retardation. Rapid diagnosis and treatment are major factors in survival and mental development. Therapy consists of a special diet that requires frequent monitoring and must be continued indefinitely.
- Galactosemia
Incidence: 1 baby in 50,000
Affected babies are missing the liver enzyme needed to convert galactose, a major sugar found in milk, into glucose, another simple sugar that the body can use. Galactose then accumulates in and damages the vital organs, leading to blindness, severe mental retardation, infection, and death. Milk and other dairy products must be eliminated from the baby's diet.
- Homocystinuria
Incidence: 1 baby in 275,000
A rare deficiency in the enzyme responsible for converting the amino acid homocysteine into cystathionine, which is needed by the brain for normal development. If undetected and untreated, homocystinuria leads to mental retardation, eye problems, skeletal abnormalities, and stroke. Treatment consists of a special diet, which for many patients includes high doses of vitamin B6 or B12, although treatment is not completely effective.
- Sickle Cell Anemia
Incidence: 1 baby in 400 among African-Americans; 1 baby in 1,000 to 30,000 among Hispanics (depending on the region of the United States); less common among babies with other ethnic backgrounds.
A blood disease that can cause severe pain, damage to the vital organs, stroke, and sometimes death in childhood. Young children with sickle cell anemia are especially prone to dangerous bacterial infections such as pneumonia and meningitis. Vigilant medical care and treatment with penicillin, beginning in infancy, can dramatically reduce the risk of these adverse effects and the deaths that result from them.
- Hearing Impairment
Incidence: 1 to 3 babies per 1,000 in well-baby nursery; 2 to 4 per 100 in neonatal intensive care.
Significant hearing impairment is one of the most common developmental abnormalities present at birth. Undetected, the condition will impede speech, language, and cognitive development. The March of Dimes supports newborn hearing screening for every baby in every state because of the potential benefits, but is concerned about the current level of technology and intervention. Implementation of universal newborn hearing screening should occur only where adequate provisions are made to avoid oversight, ensure quality, and provide the necessary follow-up. Even so, parents need to be alert throughout childhood for hearing impairment.
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