FREQUENTLY ASKED QUESTIONS
What is newborn screening?
Newborn screening is the practice of testing every baby prior to hospital discharge for certain harmful or potentially fatal conditions that are not otherwise apparent at birth. Newborn screening allows these babies to be identified and treated before they get sick, preventing serious health problems or even death. It is the largest and most successful health promotion and disease prevention system in the country and is perhaps the fastest, safest way to help protect your baby against certain diseases and medical conditions.
What are newborn screening conditions?
Most newborn screening conditions are metabolic and genetic disorders that are passed down or may show up in a family for the first time. Examples of newborn screening conditions are MCAD—a disease that results in the build-up of fatty acids in the body and can lead to brain damage and breathing problems; cystic fibrosis—a disease that affects the lungs, pancreas and digestive system; congenital hypothyroidism—a disease where infants are missing their thyroid gland, or do not produce enough of a particular thyroid hormone which stimulates growth and brain development; and sickle cell anemia— a disease where the red blood cells have an abnormal shape reducing their ability to carry oxygen throughout the body.
Are newborn screening conditions serious?
Yes, newborn screening conditions require prompt medical attention to prevent disability and sometimes death.
Are newborn screening conditions rare?
Yes, newborn screening conditions are rare -- about 1 in 800 births. Some conditions, such as sickle cell anemia and congenital hypothyroidism appear more frequently, especially among certain populations.
How many lives are saved through newborn screening?
In the US, more than 12,000 newborn lives are saved or improved through newborn screening every year. This includes babies that have hearing conditions identified at birth.
Who receives newborn screening?
Nearly all of the 4 million babies born in the US receive newborn screening. This includes babies born at home, in hospitals, and at military facilities. Newborn screening is a standard hospital procedure, just like getting your baby’s length and weight measurements.
How is newborn screening done?
There are three types of newborn screening – the heel prick for several metabolic and genetic conditions, the hearing test and pulse oximetry for critical congenital heart disease. For the heel prick test, a healthcare provider, usually a nurse or licensed midwife, takes a few drops of blood from a baby’s heel, typically 24-48 hours after birth. The blood spots are collected on a special filter paper card and shipped to the state’s public health laboratory for analysis. Shortly after birth, a baby will also receive a hearing test done by measuring brainwaves from sensors placed on the skin or by using a small microphone to measure activity within the ear. Some states also test babies for critical congenital heart disease using pulse oximetry sensors on the baby’s foot.
When does newborn screening take place?
Babies typically get newborn screening tests in the first 24-48 hours of life. It is important that this test is done within that timeframe. Some conditions are so severe that waiting can mean the difference between life and death for the baby. Some states also require that a baby is screened a second time in the second week of life as a measure of greater accuracy.
How do I get my baby screened?
Newborn screening is a standard hospital procedure, mandated by each state, so you do not have to ask to have your baby screened. Just be sure to ask the nurse if the newborn screening test was done on your baby before you leave the hospital.
If I do not have health insurance will my baby be screened?
Yes, your baby will be screened even if you do not have health insurance.
If I am giving birth at home does my baby need a newborn screening test?
Yes, all babies should receive a newborn screening test. If your midwife or doula cannot perform the test, you should bring the baby to the hospital within the first 24-48 hours of life to have the test done there.
My baby will be receiving many tests after birth. Are these all part of newborn screening?
There are many procedures at birth that are NOT considered part of newborn screening. Some of these include the APGAR score to check a baby’s vital signs and reflexes, blood glucose tests, Hepatitis B vaccinations, vitamin K injections and tests for jaundice. While these tests are valuable to your baby’s health, they are not part of newborn screening.
My ultrasounds during pregnancy were all normal. Does my baby still need a newborn screening test?
Newborn screening conditions are not identified through ultrasounds. Babies must receive a blood test within the first 24-48 hours of birth to test for newborn screening conditions.
My baby was just born and looks healthy. Does he/she still need a newborn screening test?
Most babies detected through newborn screening have no family history of the condition and appear to be perfectly healthy at birth. For this reason, every baby should be screened.
Does the newborn screening test hurt my baby?
Babies will generally experience minor discomfort when getting the heel stick, however the procedure will not scar or have long term negative effects. The hearing test and the pulse oximetry are painless.
How should I get my baby’s results?
Before leaving the hospital, you should ask if your baby received newborn screening. Then you should ask about your baby’s newborn screening results at your first pediatrician visit. If the doctor has not received the results yet, ask when you should follow-up. If the newborn screening test comes back positive, indicating that the result was “out-of-range,” you will receive a phone call from a health professional. It is important that you work with these professionals to make sure your baby receives additional tests and appropriate treatment as soon as possible.
What if I am told that one of my baby’s tests is positive?
Not all babies who have a positive, or “out-of-range” screen have disease, but it is important that you take these results seriously. If you receive a phone call from your state public health program or health care provider, make sure to have your baby re-tested immediately so he or she can get appropriate treatment and follow-up care if necessary. Early identification and early treatment is key to the success of newborn screening.
State Newborn Screening Programs
Where can I go to find out what conditions my state screens for?
Each state screens for a different number of conditions. Learn about the conditions screened in your state at the NewSTEPs state profiles page.
Are there national recommendations regarding newborn screening?
Yes, the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children works with the US Secretary of Health and Human Services to develop guidelines. Currently, the group recommends screening for 31 conditions, including hearing loss and critical congenital heart disease.
Why do states screen for different conditions?
The majority of states screen for at least 29 conditions. Differences are due to laws, funding, financial costs and availability of tests and treatment. Only a handful of states screen for critical congenital heart disease, a condition that was recommended recently by the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children. This is expected to change as funding and technology become available to state programs.
What if I want my baby to be screened for a condition that is not done in my state?
Generally these services are not covered by most health insurance companies. Several private companies and universities provide these services at an additional cost.