Frequently Asked Questions for Parents

Q. Is the only reason a parent can refuse for religious reasons?

A. 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.

Q. What is Title V?

A. Title V refers to a federal funding source. The Maternal and Child Health Bureau provides states with block grant funding for the purposes of population-based public health initiatives. Title V also provides for direct care services to women and children.

Q. If a provider currently sends specimens to Baylor Health Care Systems or Pediatrix Screening for a screen do they still have to send the specimens to the DSHS laboratory?

A. Yes, Texas law requires that newborns all receive two screens and that the screens be sent to the Department of State Health Services laboratory for processing.

Q. What is the newborn screening program?

A. The Texas Department of State Health Services Newborn Screening Program consists of testing, follow-up and case management. All babies born in Texas are required to have two rounds of screening tests for certain inheritable and other disorders. The Newborn Screening Program identifies those infants who have an abnormal screen at birth or shortly after birth. An abnormal laboratory result triggers follow-up and case management to ensure that the baby receives confirmatory testing and treatment, if needed. Early treatment can prevent serious complications such as growth problems, developmental delays, deafness or blindness, mental retardation, seizures or even early death.

Q. How are newborns tested?

A. A tiny amount of blood is taken from the baby’s heel about 24 hours to 48 hours after birth or before leaving the hospital. A second blood sample is taken from one to two weeks later. The blood sample is put on a piece of absorbent paper, dried and sent to the Texas Department of State Health Services laboratory in Austin for special screening tests.

Q. What conditions does the newly expanded screening program cover?

A. Newborns are now screened for twenty seven disorders.

Six amino acid disorders: argininosuccinic acidemia, citrullinemia, homocystinuria, maple syrup urine disease, phenylketonuria (PKU) and tyrosinemia type I;
Two endocrine disorders: congenital adrenal hyperplasia and congenital hypothyroidism;
Five fatty acid oxidation disorders: medium chain acyl-coenzyme A dehydrogenase (MCAD) deficiency, carnitine uptake defect, long-chain hydroxyacyl-coenzyme A dehydrogenase deficiency, trifunctional protein deficiency and very long-chain acyl-coenzyme A dehydrogenase deficiency;
Three hemoglobinopathies: sickle cell anemia, sickle beta thalassemia and sickle-hemoglobin C disease;
Nine organic acid disorders: 3-methylcrotonyl-coenzyme A carboxylase deficiency, beta-ketothiolase deficiency, glutaric acidemia type I, hydroxymethylglutaric aciduria, isovaleric acidemia, methylmalonic acidemia (Cbl A and Cbl B forms), methylmalonic acidemia (mutase deficiency form), multiple carboxylase deficiency and propionic acidemia; and
Other disorders: galactosemia, and biotinidase.

Q. Why are two screens required in Texas?

A. Standard practice is to take the first sample early, during the hospital stay, to detect some 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.

Q. Why is newborn screening important?

A. Most children born with these problems are from healthy families and appear healthy at birth. Parents who have already 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 early care.

Q. Who does the screening?

A. The health care provider takes the blood sample. The DSHS public health laboratory in Austin does the screening tests.

Q. What happens if a disorder is found during screening?

A. If the results of the screening tests are positive for any disorder, DSHS case management follow-up staff contacts the health care provider to quickly relay these critical results and then works with the health care provider and parents to ensure the infants get recommended follow-up screens or confirmatory testing.

Q. What are the statistics for screening in Texas?

A. DSHS receives about 760,000 newborn screening blood specimens annually. About 12,000 of these show abnormal results and require follow-up. About 400 infants actually are diagnosed with one of the seven disorders annually. Of these, about 20 infants had a normal first screen but an abnormal second screen. With the expansion we estimate an additional 3,000 abnormal results a year and a total of 600 diagnosed cases annually.

Q. Can infants with any of these disorders be cured?

A. There is no cure for these conditions. Early treatment may prevent or control the serious effects of these disorders.

Q. Can parents opt out of having their newborn screened?

A. Yes. A parent can refuse the screen for religious reasons.

Q. Who pays for the screening?

A. The health care 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, CHIP, and Title V. DSHS is reimbursed by Medicaid, CHIP, and Title V.

Last updated December 7, 2010