What should I know about newborn screening?
Please read our booklet about newborn screening in Washington State. It is included with every newborn screening card kit.
Newborn Screening: Important Newborn Screening Information for Parents in Washington State (English) (PDF).
If you would like more information, contact us with your questions.
If you need a copy of sickle cell results for college athletics, please see question #14 in the FAQ section below.
Frequently Asked Questions
- 1. What is Newborn Screening?
Our state law requires that all babies born in Washington be tested for congenital disorders. The blood must be collected by 48 hours of age by the birth facility (or birth attendant if the child is born at home). This is done by collecting several drops of blood from your baby's heel onto a filter paper card that is then dried and sent for testing to the Washington State Newborn Screening Laboratory in Shoreline, WA.
- 2. Why is my baby tested?
The NBS program detects inherited problems in newborn babies. If left untreated, these problems can lead to slow growth, blindness, brain damage and possibly death. A newborn baby may look perfectly healthy, but still have an inherited disease. Finding these problems early and treating them promptly prevents many serious complications.
- 3. Why should my baby have a second screen?
The first test finds most of the babies with conditions on our panel, but it takes a while for some conditions to show up. That is why a second screen at about 7 to 14 days is very important for your baby. Please contact your Primary Care Physician to have this done.
- 4. As a parent, may I refuse to have the test done?
You may refuse the test only if your religious beliefs and practices do not allow them. If you refuse to have the tests done, you must sign the back of the Newborn Screening Card which states that you refused to have your baby tested for the inherited problems. You have the right to ask your doctor or certified nurse midwife to discuss the screening process and to provide the screening result to you.
- 5. What tests are performed on my baby's blood?
As of August 7, 2020, Washington State screens for the following conditions through Newborn Screening:
Amino Acid Disorders
Argininosuccinic acidemia (ASA)
Maple syrup urine disease (MSUD)
Tyrosinemia type I (TYR-I)
Fatty Acid Disorders
Carnitine uptake deficiency (CUD)
Long-chain L-3-hydroxy acyl-CoA (LCHAD) deficiency
Medium-chain acyl-CoA dehydrogenase (MCAD) deficiency
Trifunctional protein (TFP) deficiency
Very-long chain acyl-CoA dehydrogenase (VLCAD) deficiency
Organic Acid Disorders
3-hydroxy-3-methylglutaric aciduria (HMG)
Beta-ketothiolase deficiency (BKT)
Glutaric acidemia type I (GA-I)
Isovaleric acidemia (IVA)
Methylmalonic acidemias (CblA,B and MUT)
Multiple carboxylase deficiency (MCD)
Propionic acidemia (PROP)
Congenital adrenal hyperplasia (CAH)
Congenital hypothyroidism (CH)
Lysosomal Storage Disorders
Glycogen storage disorder type II (Pompe)
Mucopolysaccharidosis type I (MPS-I)
Other Treatable Disorders
Biotinidase deficiency (BIOT)
Congenital adrenal hyperplasia (CAH)
Congenital hypothyroidism (CH)
Cystic fibrosis (CF)
Severe combined immunodeficiency disorder (SCID)
Spinal muscular atrophy (SMA)
X-linked adrenoleukodystrophy (X-ALD)
- 6. How can I find out about the results of my baby's newborn screen?
Your baby's doctor will receive the report of the tests, usually 5 - 7 days after the sample is received in our laboratory. Make sure to ask your baby's doctor about the results of your baby's newborn screen.
- 7. My baby has a negative test. What does that mean?
A negative test means that your baby probably does not have one of the inherited disorders tested for by newborn screening. No test is 100 % accurate. There is a slight chance that a test will show a negative result when there is a problem.
- 8. My doctor asked for another sample because the first one was unsatisfactory. What does that mean?
All samples are examined in the testing laboratory for sample acceptability. Samples considered unsatisfactory may not have enough blood to perform all the tests, may have been collected improperly, or may have been delayed in the mail. Follow your doctors instructions on where to go to have another sample collected.
- 9. My baby has a positive test. What does that mean?
If one of your baby's tests is positive, the doctor may repeat the Newborn Screening test or request another type of blood test. If an inherited problem is found, your baby's doctor will discuss the next steps with you; this may include genetic counseling.
- 10. Test results show my baby is a carrier of the gene for an inherited disease. What does that mean?
A carrier is someone who does not have the disease itself, but can pass it to their children. A baby who has sickle cell trait is a carrier of a gene for sickle cell disease. These babies tend to be as healthy as babies who are not carriers. The parents should discuss the meaning of being a carrier with their doctor or genetic counselor.
- 11. Can my baby be screened for additional disorders?
For people interested in having screening done in addition to the disorders screened for by this program, please see the Laboratories that Offer Testing for Additional Newborn Disorders section on the Additional NBS Resources page for organizations that offer this service.
- 12. Where can I get more information to assure my baby receives the best possible start?
The Washington State Department of Health offers many services, in addition to the Newborn Screening Program, that can help your baby receive the best possible health care. For example, the Department has a hearing screening program which helps many hospitals screen babies for hearing loss - more information can be found on the EHDDI website.To learn more about these DOH services and other state services please see the Infants, Children, and Teens page.
- 13. What happens to my child's newborn screening specimen after testing is complete?
Please visit our Privacy Page for information on the privacy and security of newborn screening specimen/information forms.
- 14. My child is going to college and we need copies of their sickle cell results. How do I get these results?
The Washington State Newborn Screening (NBS) Program has been screening all newborns for sickle cell disease and other inherited hemoglobin conditions since 1991 with the following caveats:
- May 1991 in Pierce County
- August 1991 in King County
- November 1991 Statewide
The testing also detects healthy babies who are carriers of sickle cell disease and other inherited hemoglobin conditions. If you were born in Washington after May 1, 1991 (as indicated above) you can request a copy of your results from the NBS program using the instructions on our Hemoglobinopathies webpage.