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The Newborn Screening Program (NBS) was created to help identify conditions infants may possibly have or develop later in life. It is a way for medical professionals as well as parents to start preventive measures early so symptoms may be warded off until a later time or stopped altogether.
What's in this Guide?
- What Is Newborn Screening?
- Newborn Conditions Screened By State
- Recommended Uniform Screening Panel (RUSP)
Disclaimer: Before You Read
It is important to know that your genes are not your destiny. There are various environmental and genetic factors working together to shape you. No matter your genetic makeup, maintain ideal blood pressure and glucose levels, avoid harmful alcohol intake, exercise regularly, get regular sleep. And for goodness sake, don't smoke.
Genetics is a quickly changing topic. Read More...
A few drops of blood are all it takes to get these important results. If you are pregnant or know someone who is, this information is invaluable.
We've compiled all the information and links to the various state sites so you can be sure you know what to expect after the baby is born.
What Is Newborn Screening?
Newborn screening refers to a blood sample taken from infants that helps provide insight into the possibility of each child having certain disorders and diseases 1. Without this test, parents would have to wait until symptoms arose before they were aware of a condition developing.
The newborn screening test procedure, sometimes called the Recommended Uniform Screening Panel (RUSP), involves poking the baby’s heel and putting the blood sample on a card, known as filter paper. This card is then sent to a laboratory so the blood test of a newborn baby can indicate a potential problem or show there are no concerns.
The blood will be tested to find any markers for particular illnesses. The newborn screening guidelines are set by a committee and are updated frequently.
Newborn Conditions Screened By State
Each state has its own set of rules regarding what to test for in the newborn screening panel as well as which supplemental newborn screening they want to include.
For example, spinal muscular atrophy was a condition added to the RUSP in 2018 2 but to answer the question "what states screen for SMA?" the answer is, not all of them. While it may be encouraged to test for certain conditions, some states only focus on those they see frequent cases of while others test for nearly anything possible.
Here's what you can expect in terms of NBS in the state where you live.
The Alabama Newborn Screening Program requires all infants get tested within 28 days of life. Parents may be able to refuse certain testing if their religious beliefs cause a conflict.
However, all medical professionals who had contact with or provided care for the child are not held liable should any issues arise at any later time after the testing is rejected.
Known as the Newborn Bloodspot Screening Program, Alaska offers testing to determine if any congenital or inherited conditions are present. The test occurs before you may bring your baby home from the hospital.
The Northwest Screening Laboratory, Oregon Division of Health handles the samples. The state focuses on eight primary disorders, including hypothyroidism, phenylketonuria, galactosemia, Maple Syrup Urine Disease (MSUD), biotinidase deficiency, Congenital Adrenal Hyperplasia (CAH), hemoglobinopathies, and cystic fibrosis.
Other metabolic disorders were added in 2003 thanks to new technology, including amino acid and urea cycle disorders, fatty acid oxidation disorders, and organic acid disorders.
The bloodspot/heel stick screening performed in Arizona gets completed when the baby is between 24 and 36 hours old. A second screening is done between 5 and 10 days old at the first doctor’s visit. The Arizona Newborn Screening program looks for 29 different disorders.
The Newborn Screening office for Arkansas is located in the capital of Little Rock. Over 31 different disorders are included in the Arkansas Department of Health Newborn Screening Program. Testing is completed at the Arkansas Public Health Laboratory.
California’s program got started in 1966 but has expanded exponentially since then. There are now 80 congenital and genetic disorders included on the test as of 2019.
Results of the newborn screening California offers are kept confidential except for research projects approved by the state that could benefit from the information as well as the appropriate physicians who need to know. Newborn screening test results can be expected within two to three weeks.
Colorado performs three tests at birth. A hearing screening, pulse oximetry screening, and blood spot screening are conducted. The state is considered a two-screen state. This means they screen infants within 24-48 hours of birth and again between 8 and 14 days of life.
The Connecticut Newborn Screening Program tests for more than 60 conditions. The program began with only PKU in 1964 and has since grown.
It is estimated that people save between $2 and $4 for every $1 spent on newborn screening. The Delaware Newborn Screening Program makes it possible for parents to save on medical costs and special education when the panel tests for conditions and catches problems early.
If left undetected, these disorders would have the chance to cause symptoms without preventive care to delay their arrival.
The Florida Department of Public Health began using a web order application for their newborn testing. This ensures better accuracy of the information that the Bureau of Public Health Laboratories receives.
The state screens for 32 disorders recommended nationally and another 22 secondary disorders. More than 1,000 blood samples get tested each day.
The Georgia Newborn Screening Program is considered a six-part preventive system. Education, screening, follow-up, medical diagnosis, management, and evaluation come together to make this program work. It checks for 31 disorders.
The Newborn Metabolic Screening Program of Hawaii tests for 33 disorders. It gets completed before the baby leaves the hospital or within one week of birth.
The Department of Health and Welfare is responsible for testing in Idaho. Forty-seven conditions are part of it.
Congenital heart disease was added to the Illinois newborn screening panel in 2013. Forty other disorders are tested for in this state, as well as hearing. Hearing was added in 2002, with a basic test starting back in 1965.
Forty-nine conditions get checked during an Indiana newborn screening procedure. The heelstick screen, hearing screen, and pulse oximetry screen are all included.
The purpose of the Iowa Newborn Screening Program is early intervention. There are more than 29 conditions tested in this state’s screening.
Kansas performs newborn screening about 24 hours after birth. The Newborn Screening Follow-Up Program ensures all infants with a positive result get seen promptly and rechecked to determine if the results are correct.
The Kentucky Cabinet for Health and Family Services offers newborn screening. Their test gets performed after 24 hours and before the baby leaves the hospital. State law says even babies not born in the hospital should be tested within 48 hours.
Disorders recommended by the American College of Medical Genetics are included in Louisiana's newborn screening test. Results can be viewed by medical professionals through the Secured Remote Viewer Web-Based System.
The Maine Newborn Bloodspot Screening Program has its own state protocols for adding conditions to its panel. No infant can be discharged from the hospital until a screening is completed.
The Newborn Metabolic Screening performed in Maryland got its start in 1965. Since then, more than 250 babies have been found in the state with PKU. Fifty conditions are now checked.
Now known as the New England Newborn Screening Program, Massachusetts revamped their program in 2018. One disease was checked for in 1962, and now many more are on the list.
The Michigan Newborn Screening Program helps to detect upwards of 250 infants with a disorder each year. Babies who test positive will receive follow-up care. The NBS Program in Michigan typically holds educational conferences with webinar attendance available for those who cannot be there in person.
The Minnesota Department of Health handles newborn screening. The panel was updated in 2018 and now includes at least 34 conditions.
Infants tested for genetic disorders in Mississippi will receive genetic counseling for their parents. The newborn screening test performed in the state tests for 30 core conditions and another 27 secondary conditions.
The MSPHL performs the newborn laboratory screenings in Missouri. The Newborn Screening Laboratory tests for 12 main conditions and their related counterparts.
Montana’s Newborn Screening Program includes three screenings. Hearing screening and intervention, Critical Congenital Heart Disease screening, and metabolic screening are all available. The blood screen checks for more than 37 conditions.
Newborn screening gets handled by the Nebraska Department of Health & Human Services. The test checks for more than 20 conditions.
Thirty conditions get tested through the Nevada Newborn Screening Program. One screening gets completed between 24 and 48 hours and another should be done between 10 and 14 days.
New Hampshire infants get their blood test completed between 24 and 72 hours after birth, as per state legislation. An annual report of screening results must be completed by the state.
New Jersey, like some other states, has laws regarding newborn screening. Those laws indicate babies must have their blood tested within 48 hours of birth. They are checked for 55 disorders.
Two newborn screens must be completed in New Mexico. The Newborn Genetic Screening Program provides the first test between 24 and 48 hours and the second between 10 and 14 days. More than 26,000 infants get tested annually.
One to two days after birth, New York infants get their blood checked for 50 disorders. The state does not charge for this service. Exposure to HIV is now included in the test, and the screening regulations regarding the program get revised regularly.
Conditions that may cause mental retardation or death are the focus of the newborn test in North Carolina. State law requires the blood sample within 24 to 48 hours after birth.
“Saving lives one foot at a time,” is the motto of North Dakota’s Newborn Screening Program. The Advisory Committee makes regular assessments and updates the program as needed for the most accurate results and best health of all infants in the state.
Ohio began its program in 1965 like many other states. Only one condition was on the list back then, but there are now many included. Several Lysosomal Storage Disorders are among the more recently added options.
Within the first week of life, every baby born in Oklahoma is required to undergo newborn screening. The Public Health Laboratory handles the testing. Fourteen main conditions and associated disorders are among the list.
The Northwest Regional Newborn Bloodspot Screening Program in Oregon focuses on cystic fibrosis, metabolic conditions, hemoglobin, and endocrine disorders. Over 40 conditions are included within these categories.
The Pennsylvania Department of Health’s Newborn Screening and Follow-Up Program handles testing. Ten conditions are mandated for screening and follow-up while 27 others require follow-up only.
Thirty-one blood conditions get checked during Rhode Island’s newborn screening test. Hearing loss and Critical Congenital Heart disease are included.
Newborn screening in South Carolina checks for 53 disorders. Newborn Bloodspot Screening is the formal name of the lab panel used by the state.
South Dakota Codified Law and Administrative Rules of South Dakota require all newborns be screened. Revised specimen collection cards became available in 2017 for more accurate results of all the genetic, inherited, and metabolic disorders being tested.
The Tennessee Newborn Screening Program began in 1968. PKU was the only option on the panel at that time but there are now many more included. Hearing became part of the testing in 2008. In 2013, pulse oximetry became mandatory as well to check for Critical Congenital Heart Disease.
The newborn screening Texas offers is known as the Newborn Screening Clinical Care Coordination Program. The goal is to decrease mortality rates for infants and children.
Fifty-three conditions are included, along with a hearing test and additional screening for critical congenital heart disease. Public health and prevention specialists follow up after a positive result is found.
Utah’s Newborn Screening Program can improve the lives of every 1 in 300 babies. At least 50 disorders are included on the panel that can help identify problems before they arise and provide swift treatment.
Four new conditions got added in May 2019 to Vermont’s newborn screening panel. Mucopolysaccharidosis Type I (MPS I), Pompe Disease, Spinal Muscular Atrophy (SMA), and X-linked adrenoleukodystrophy (X-ALD) are now included. There are many more disorders on the list.
The Virginia Newborn Screening Program includes several services. Dried blood spot testing, VaCARES birth defects surveillance, early hearing detection, and Critical Congenital Heart Disease are all available.
Saving lives is the goal for the Washington State Department of Health, Office of Newborn Screening. One screening is mandated by law while a second screening is just recommended. The second test should be performed between 7 and 14 days.
After 24 hours of being born, West Virginia requires babies to receive their screening. It must be done before the baby reaches eight days old. More than 27 conditions are on the panel.
Forty-four disorders get screened for in Wisconsin. The Department of Health Services Newborn Screening Program handles the sample collecting while the Wisconsin State Laboratory of Hygiene handles the processing.
You can contact the Newborn Screening & Genetics Coordinator within the Public Health Division for more information on Wyoming’s newborn screening policies. The state tests for amino acid disorders, endocrine disorders, fatty acid oxidation disorders, hemoglobinopathies, organic acid disorders, and more.
Recommended Uniform Screening Panel (RUSP)
The Department of Health and Human Services (HHS) is responsible for recommending that states participate in a newborn screening panel. Disorders get chosen based on the ability that many states have to test for them.
It is also necessary that effective treatments are available for those disorders being tested and that evidence supports an overall benefit of testing. RUSP provides a standardized list of conditions 3 that states should consider, but ultimately each state makes up its own mind about which ones they choose to add to their program.
What Is a Panel?
A panel is a test that screens for certain conditions. The list of conditions indicated for a newborn screening panel differs from state to state 4, but a standardized list should be followed to an extent.
The panel will show whether or not a child has a predisposition for a certain illness or disorder but does not actually indicate whether the infant has that particular disease at the time.
What if I Want Screening Not Provided By My State?
Since not all states have the same program, screening not provided by your particular state can be requested.
You need to speak with your doctor about the screens you want performed and see if it is worthwhile to have an assessment done for a particular order. This may be vital for parents with conditions that could be inherited who want to know whether or not their baby has a strong indication they may have the same problem.
How Is a Condition Added to the RUSP?
Certain criteria must be met before a condition gets added to the RUSP.
How to Nominate a Condition
Individuals and organizations can nominate a condition. They must first form a team of people who can prove its efficacy.
Researchers who have expertise on the particular disorder being presented are first to include. It’s also important to have advocacy groups on your side who are knowledgeable on newborn screening issues as well as other individuals who may be interested in the cause.
There should be various letters of support from those team members. Each person needs to fill out and include a Conflict of Interest Disclosure Form.
Responses to the nomination form should also be provided. Any and all supporting data and scientific claims should then be presented.
The process is lengthy but necessary to ensure only the most appropriate conditions are included on this already lengthy screening panel. A nomination and prioritization workgroup oversees the package first before sending it on to a condition review workgroup.
The committee deliberates and votes before a final decision is made by the Secretary of Health and Human Services.
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- Newborn Screening Portal.
Centers for Disease Control and Prevention. February 7, 2019.
- SMA Added to National List of Disorders to Screen for at Birth.
KRISTIN STEPHENSON. The Muscular Dystrophy Association (MDA). 2018.
- Recommended Uniform Screening Panel.
Health Resources & Services Administration. February 2019.
- Status of Newborn Screening Programs in the United States.
Bradford L. Therrell, PhDa, Alissa Johnson, MAb, Donna Williams, BSa. May 2006.
- Nominate a Condition.
Health Resources & Services Administration. February 2019.