The March of Dimes is the #1 advocate for mothers and babies. With increasing rates of infant mortality, the March of Dimes is tirelessly working to increase awareness of Newborn Screening, the importance of a diet rich in folic acid and also the increasing rate of premature birth.
Newborn screening for potentially life-threatening disorders is the focus of the March of Dimes for the January observance of Birth Defects Prevention Month. Newborn screening can help assure that infants with detectable conditions get immediate treatment and avoid the devastating consequences of undetected conditions.
All states screen newborns for some metabolic birth defects. These conditions cannot be seen in the newborn, but can cause physical problems, mental retardation and, in some cases, death. Most babies get a clean bill of health but, if test results show that the baby has a birth defect, early diagnosis and treatment can make the difference between lifelong disabilities and healthy development. Except for hearing screening, all of these tests are done using a few drops of blood from the newborn’s heel.
Each state determines which conditions it will screen. Minnesota currently screens for more than 20 conditions including those recommended by the March of Dimes. Expanded testing has been approved and is waiting funding.
Over the past two years, the March of Dimes updated its recommendations about newborn screening, increasing the minimum to 30 conditions from 10. The update was made in support of a report prepared for the Maternal and Child Health Bureau of the U. S. Health Resources and Services Administration by the American College of Medical Genetics (ACMG). The March of Dimes commended the ACMG report for advancing the field of newborn screening, defining a uniform panel of conditions to test for, and providing a policy framework for the states.
“All these genetic conditions have an impact on the family,” said Dr. Jennifer L. Howse, President of the March of Dimes. Thanks to advances in scientific technology, especially the use of tandem mass spectrometry, the capability exists to provide efficient and economical testing for a wider variety of disorders, and to help more babies lead full and healthy lives, Howse explained.
The conditions being recommended for screening can be grouped as follows: three categories of metabolic disorders: organic acid, amino acid, and fatty acid; as well as hemoglobin disorders; and other disorders. Sickle cell anemia is a hemoglobin disorder and cystic fibrosis is included in the other category.
Perhaps the best-known amino acid disorder is PKU; a disorder in which a baby cannot process a part of protein called phenylaline, which is found in nearly all foods. It is managed with diet, but left undetected, it causes brain damage and mental retardation.
In addition to newborn screening and in accordance with our mission to improve the health of babies by preventing birth defects, premature birth and infant mortality, the March of Dimes conducted a National Folic Acid Campaign from 1999-2002 to reduce the incidence of neural tube defects. The March of Dimes continues to fund research and community grants to reduce/eliminate birth defects. The March of Dimes has continued involvement with agencies working to increase folic acid awareness and consumption. The March of Dimes remains actively involved in the leadership of the National Council on Folic Acid, continues to conduct surveys among women of childbearing age and health care professionals. If women of childbearing age consume 400 mcg of folic acid daily before and during early pregnancy, it may help reduce their baby’s risk for birth defects of the brain and spine, also known as neural tube defects (NTDs).
The Folic Acid Campaign utilized the Foundation’s strengths—bi-partisanship, strong community and national partnerships, MCH expertise, volunteers—and its reputation to draw attention to, and impact, an important public health issue facing families and babies. Successes of the campaign include:
• Folic acid awareness increased from 52% to 80% among women of childbearing age
• Folic acid was added to the nation’s grain supply
• The incidence of neural tube defects decreased 19% from 1995 to 1999 (JAMA)
• Establishment of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC
Folic acid will continue as a Foundation educational program. New national and state leadership already has been identified to carry on daily operations of the campaign. The Foundation is now ready to build on this experience and use its strengths to address another issue of central importance to our mission: premature birth.
Birth defects are also related to premature birth, which has increased 29% since 1981. Many premature infants are also affected by birth defects. In 2003, the March of Dimes launched a multi-year, multi-million dollar national campaign to fund research and to reduce the incidence of premature birth. On average, 136 babies are born too soon in Minnesota each week. Premature babies have an increased chance of suffering from hearing and vision problems, chronic lung disease, cerebral palsy and mental retardation.
The March of Dimes is a national voluntary health agency whose mission is to improve the health of babies by preventing birth defects, premature birth and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education, and advocacy to save babies. For more information, visit the March of Dimes Web site at www.marchofdimes.com or its Spanish language Web site at www.nacersano.org.
The Minnesota Chapter of the March of Dimes is always looking for volunteers who care about maternal and infant health. We raise awareness and funds through a number of special events throughout the year. Go to: www.marchofdimes.com/minnesota to find events near you. If you would like more information about how you can make a difference in the lives of babies in MN, call 952-835-3033 or e-mail [email protected]
Kaija Shaffer is the State Director of Communications, March of Dimes, MN Chapter.