Newborn Screening Program Frequently Asked Questions
What is the Newborn Screening Program?
The Texas Department of State Health Services Newborn Screening Program consists of testing, follow-up and clinical care coordination. All babies born in Texas are required to have two rounds of screening tests for certain inheritable and other disorders. Through the Newborn Screening Program, infants are identified who have an abnormal screen at birth or shortly after birth. An abnormal laboratory result triggers follow up and clinical care coordination to ensure that the baby receives confirmatory testing and treatment if needed. Early treatment can help prevent serious complications such as growth problems, developmental delays, deafness or blindness, intellectual disability, seizures or even early death.
What is the history of newborn screening in Texas?
The screening of large numbers of newborns in Texas was made possible and more affordable with the discovery of the filter paper method for testing blood spots, including the introduction of automated laboratory equipment. Texas added screening for the following genetic and heritable disorders in:
1963 – Phenylketonuria (PKU)
1978 – Galactosemia (GALT)
1980 – Congenital Hypothyroidism (CH)
1983 – Hemoglobinopathies (Hb)
1989 – Congenital Adrenal Hyperplasia (CAH)
1999 – Newborn hearing screening implemented (point-of-service screen)
In 2006, with the development of Tandem Mass Spectrometry (MS/MS), DSHS began testing for a panel of metabolic disorders recommended by the American Academy of Medical Genetics. Following the addition of MS/MS, these additional disorders were added in:
2007 – Biotinodase (BIOT)
2009 – Cystic Fibrosis (CF)
2012 – Severe Combined Immune Deficiency Syndrome (SCID)
2014 – Critical Congenital Heart Disease (CCHD) implemented (point-of-service screen)
2015 – Secondary Conditions of the Recommended Uniform Screening Panel
2019 – X-Linked Adrenoleukodystrophy (X-ALD)
2021 – Spinal Muscular Atrophy (SMA)
How are newborns tested?
A very small amount of blood is taken from the baby’s heel 24 to 48 hours after birth or before leaving the birthing facility. A second sample is taken one to two weeks later, usually at the baby's first check-up. The sample is put on a piece of absorbent paper, dried and sent to the DSHS laboratory in Austin for screening tests.
What conditions does the Newborn Screening Program cover?
Texas screens newborns for 57 conditions which includes 31 core conditions and 24 secondary conditions. Blood is tested for 55 of those conditions. The two other conditions relate to a newborn’s hearing and screening for critical congenital heart disease.
Blood samples are sent to the DSHS state laboratory in Austin. The blood spots are screened for disorders that can affect a baby's amino acids, endocrine system, fatty acid oxidation, hemoglobin, organic acids, and other disorders. Point-of-service tests screen a newborn’s hearing and for critical congenital heart disease (CCHD) before going home from the birthing facility. The hearing screen checks if the baby may be deaf or hard of hearing. The CCHD screen checks for possible heart defects.
Why are two screens required in Texas?
Standard practice is to take the first blood spot sample early, while the baby is still at the birthing facility, to detect disorders at the earliest possible chance. In some cases, the first sample may not identify all abnormal screens and a disorder may be detected only on the second screen.
Why is newborn screening important?
Most children born with these disorders are from healthy families and appear healthy at birth. Parents who have had healthy children do not expect any problems with birth defects. Because every baby is tested soon after birth, any child who may have a disorder is identified early and can get immediate care.
Who does the screening?
The healthcare provider takes the blood sample. The DSHS public health laboratory in Austin does the screening tests.
What happens if a disorder is found during screening?
If screening tests are abnormal for any disorder, DSHS clinical care coordination (CCC) follow-up staff contacts the healthcare provider to quickly report the abnormal results. CCC staff members then work with the healthcare provider and parents to ensure that the infant gets recommended follow-up screens or confirmatory testing.
What are the statistics for screening in Texas?
There are approximately 400,000 births each year in Texas. The DSHS public health laboratory receives approximately 800,000 specimens and clinical care coordination staff provides follow-up on approximately 20,000 abnormal screens. There are approximately 900 diagnosed core disorders annually.
Can infants with any of these disorders be cured?
There is no cure for these conditions. Early treatment may prevent or control the serious effects.
Can parents opt out of having their newborn screened?
Yes. A parent can refuse the screen for religious reasons only.
Is the only reason a parent can refuse for religious reasons?
The statute’s only reference to allowing the parent, guardian, or managing conservator the right to object to screening is if it conflicts with their religious tenets or practices.
Who pays for the screening?
The healthcare provider or facility sending the specimen to the laboratory buys the specimen collection kit for private pay patients. How these patients are billed is determined by the commercial insurance carrier. DSHS provides specimen collection kits at no cost to those covered by Medicaid and is reimbursed by Medicaid.