Newborn screening program

Information for Families

Congratulations if you have just had a baby join your family! The California Newborn Screening Program (NBS) is a public health program that screens all babies for many serious but treatable genetic disorders. All babies born in California are required to get screened soon after birth.

Newborn screening began in California in 1966 with screening for one disorder, phenylketonuria (PKU). The Program has expanded and now includes over 80 different disorders, both genetic (passed down in families) and congenital (present at birth). The goal of the program is to identify babies with these disorders early, so that treatment can be started right away.

The content within these pages is meant to be informational, and should not replace the care provided by your baby’s doctor. Make sure to talk to your baby's doctor if you have any questions about your baby’s health or your family history.

Important Information for Parents Trifold

Newborn Screening: Important Information for Parents trifold in all languages:

For more information on newborn screening, including the hearing test, the congenital heart defect screening, as well as the blood spot screening for rare disorders, see the flipbooks below, provided by Expecting Health and Navigate Newborn Screening.

Newborn Screening Program Overview Videos

English Video	Spanish Video	Blood Spot Video

Title: California Department of Public Health's Newborn Screening Program Language: English Published: 7/2/2018 Duration: 3:23	Title: Programa de Detección de Recién Nacidos de California Language: Spanish Published: 7/2/2018 Duration: 4:17	Title: Important Facts about My Baby's Newborn Screening Blood Spot Storage Language: English Published: 1/18/2019 Duration: 3:00

English Video

Spanish Video

Blood Spot Video

Title: California Department of Public Health's Newborn Screening Program

Language: English

Published: 7/2/2018

Duration: 3:23

Title: Programa de Detección de Recién Nacidos de California

Language: Spanish

Published: 7/2/2018

Duration: 4:17

Title: Important Facts about My Baby's Newborn Screening Blood Spot Storage

Language: English

Published: 1/18/2019

Duration: 3:00

Program Resources

Education Resources

Frequently Asked Questions

How is the Newborn Screening test done?

A few drops of blood taken from the baby’s heel are put on special filter paper. The blood is then sent to a state-approved lab for testing. The ideal time to do the test is when the baby is between 12 and 48 hours of age. This is a simple and safe test. Before the test is collected, review the information on the pink copy of your baby’s newborn screening test request form. Tell the provider if any of the information about you, your baby, or your baby’s doctor is not correct. This will help make sure that your doctor gets your baby’s newborn screening test results.

How will I know if the test has been done?

Your provider will give you the pink and blue copies of the test request form as proof that the test was done. Take the pink copy to your baby’s first doctor visit. If you move after the test is done, make sure you notify the hospital or midwife and your doctor’s office with your new address and phone number. This will help us contact you and your doctor right away if your baby needs more tests.

Why do some babies need more tests?

1. The lab could not run the test because there was a problem with the way the first blood sample was collected.

2. The test result was abnormal.

When more testing is needed, you will be contacted by your provider with instructions about what to do next. Make sure you follow their instructions and obtain the testing as soon as possible. If these disorders are not found and treated soon after birth, the baby can have serious and/or life-threatening health problems. Early treatment can prevent many of these problems.

What if the test result is abnormal?

How much does the test cost?

Please check with your provider or the Newborn Screening website at for the current cost of the test. Medi-Cal, health plans and most private insurance will pay for the test.

How can I get the Newborn Screening results?

You can request a copy from your baby’s doctor or midwife. Your provider should receive your baby’s results within a month. If your provider does not have the results, he/she can contact the Newborn Screening Program to request a copy. Please provide your baby’s doctor with the pink copy you were given after the test was collected. This will help your doctor get the results.

Can I refuse the test for my baby?

You can refuse testing only if it is in conflict with your religious beliefs or practices. You must then sign a test refusal form. It states that not having the test done can result in serious illness or permanent damage to your child and that you accept responsibility should this occur.

What types of disorders are screened for in California?

Newborn screening identifies many rare, treatable genetic disorders. These disorders have varying degrees of severity. If identified early, many of these conditions can be treated before they cause serious, sometimes life-threatening, health problems. Treatment may include close monitoring of the baby’s health, medication, dietary supplements, and/or special diets.

What happens to my baby’s blood spots after the tests are done?

California, like many other states, stores newborn screening bloodspot cards. The bloodspot cards may be used for tests to improve the screening program or to develop tests for new disorders.

The bloodspots may also be used for studies about diseases in women and children. The stored bloodspot cards do not have information, such as names or addresses, that can be used to identify you or your baby. The program follows all federal and state privacy and research laws. If you want the bloodspot card destroyed after the newborn screening test is done, that is your right. To learn more about the storage and use of leftover blood spots, or to find out how to get your baby’s bloodspot card destroyed, visit our What Happens to My Baby's Blood Spots After the Newborn Screening Test page.

What are the stored blood spots used for?

The NBS Program uses residual blood spots for: *Quality control testing to ensure the tests are correct and the lab equipment is working *To evaluate and improve the current NBS program *To develop new tests to add to the panel, such as when cystic fibrosis was added Over the last 20 years, newborn screening in California has gone from testing each baby for 3 diseases to testing for over 75 disorders. By adding tests, we have been able to prevent serious illness, including death and disability, in many more babies

Are the stored blood spots used for anything else?

Yes. California law requires the NBS program to use or provide newborn screening specimens for department-approved studies of diseases in women and children, such as research related to identifying and preventing disease. This could be to study birth defects, chronic disease, exposure to toxins or infections. There are several levels of oversight in place to ensure that uses are appropriate. Researchers must meet all federal and state privacy law requirements. The blood spots are provided without any personal identifying information. Because of this, you will not be notified of any study test results for your baby. No extra blood spots or specimens will be collected from your baby for research

Could the stored blood spots ever benefit me or my baby?

Yes. The stored NBS blood spots could provide useful information to you or your family. In the future, the blood spot could be used, with your permission, to detect a disorder not included in the NBS panel. You may request that your child’s sample be sent to a specific research study, your baby’s doctor, or a laboratory for testing not done by the NBS Program.

Can I request that my baby’s blood spots be destroyed?

You may request your baby’s blood spots be destroyed after newborn screening has been completed. Keep in mind that if your baby’s blood spots are destroyed, they will not be available if you need them in the future. To get a form to request that your child’s blood spots be destroyed, click here (PDF).

Resources

Page Last Updated :

What’s New

Administrative

Diseases and Conditions

Family Health

Health and Safety

Health Facilities

Personal Health and Prevention

Licensing, Certification and Other Credentials

Person Interested In

Newborn screening program

Information for Families

Important Information for Parents Trifold

Newborn Screening Program Overview Videos

Program Resources

Education Resources

Frequently Asked Questions​

Resources

External Resources

Related Programs​

Frequently Asked Questions

Related Programs