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Parents

Congratulations on your growing family! Around 24 to 48 hours after birth, your infant should receive a blood screening for over fifty hidden disorders that can cause disability or death if not treated. For many of these disorders, there is no family history. The results of this blood test can help your infant’s health care providers identify and treat these disorders before your infant becomes sick.

This test requires a small poke on your baby’s foot. Five drops of blood are placed on a special paper labeled with your infant’s important information. This information will include your baby’s health care provider and contact information. Please notify your birthing personnel which provider your infant will be seeing after birth. Correct provider and parent contact information are important to ensure prompt notification of any abnormal screen result.  After this test is collected, the specimen is sent to the Oklahoma Public Health Lab to begin testing.

Follow-up providers receive normal screen results through an electronic reporting system.  If your infant’s newborn screen results are out-of-range or unable to be tested, the provider listed on the form submitted with your infant’s blood will be called. This provider will reach out to discuss the results with you and determine what steps should be taken next.

No news is not always good news! Please ask the provider at your baby’s next appointment what their screening results are. 

Brochure

Mandy's Story

Newborn Screening: Mandy's Story from OSDH on Vimeo.

Jase's Story

Oklahoma statute requires all newborns to be screened within the first seven days of life. As the parent, you may decline this test because of your religious beliefs. If collecting a newborn blood spot screen conflicts with your religious beliefs, please complete a refusal form and return it to the Newborn Screening Blood Spot Program. Please note that early detection of these disorders allows doctors to start treatment before harmful effects occur such as disabilities, severe illness, or even death.
 

Oklahoma screens for more than 50 hidden disorders. An inclusive list of disorders along with information for each disorder can be found at Baby's First Test. 

  • 2-Methyl-3-Hydroxybutyric Acidemia (2M3HBA)
  • 2-Methylbutyrylglycinuria (2MBG)
  • 3-Hydroxy-3-Methylglutaric Aciduria (HMG)
  • 3-Methylcrotonyl-CoA Carboxylase Deficiency (3-MCC)
  • 3-Methylglutaconic Aciduria (3MGA)
  • Beta-Ketothiolase Deficiency (BKT)
  • Glutaric Acidemia, Type I (GA-1)
  • Holocarboxylase Synthetase Deficiency (MCD)
  • Isobutyrylglycinuria (IBG)
  • Isovaleric Acidemia (IVA)
  • Malonic Acidemia (MAL)
  • Methylmalonic Acidemia (Cobalamin Disorders) (Cbl A,B)
  • Methylmalonic Acidemia (Methymalonyl-CoA Mutase Deficiency) (MUT)
  • Methylmalonic Acidemia with Homocystinuria (Cbl C, D, F)
  • Propionic Acidemia (PROP)

  • Carnitine Acylcarnitine Translocase Deficiency (CACT)
  • Carnitine Palmitoyltransferase I Deficiency (CPT- IA)
  • Carnitine Palmitoyltransferase Type II Deficiency (CPT- II)
  • Carnitinue Uptake Defect (CUD)
  • Glutaric Acidemia, Type II (GA- 2)
  • Long-Chain L-3 Hydroxyacyl-CoA Dehydrogenase Deficiency (LCHAD)
  • Medium-Chain Acyl-CoA Dehydrogenase Deficiency (MCAD)
  • Short-Chain Acyl-CoA Dehydrogenase Deficiency (SCAD)
  • Trifunctional Protein Deficiency (TFP)
  • Very Long-Chain Acyl-CoA Dehydrogenase Deficiency (VLCAD)

  • Argininemia (ARG)
  • Argininosuccinic Aciduria (ASA)
  • Benign Hyperphenylalaninemia (H-Phe)
  • Biopterin Defect in Cofactor Biosynthesis (BIOPT-BS)
  • Biopterin Defect in Cofactor Regeneration (BIOPT- REG)
  • Citrullinemia, Type I (CIT)
  • Citrullinemia, Type II (CIT II)
  • Classic Phenylketonuria (PKU)
  • Homocystinuria (HCY)
  • Hypermethioninemia (MET)
  • Maple Syrup Urine Disease (MSUD)
  • Tyrosinemia, Type I (TYR I)
  • Tyrosinemia, Type II (TYR II)
  • Tyrosinemia, Type III (TYR III)

  • Mucopolysaccharidosis Type-I (MPS I)
  • Pompe (POMPE)

  • Congenital Adrenal Hyperplasia (CAH)
  • Primary Congenital Hypothyroidism (CH)

  • Hemoglobinopathies (Var Hb)
  • S, Beta-Thalassemia (Hb S/ßTh)
  • S, C Disease (Hb S/C)
  • C, C Disease (Hb CC)
  • Sickle Cell Anemia (Hb SS)
  • E Disease (Hb EE)

  • X-Linked Adrenoleukodystrophy (ALD)
  • Biotinidase Deficiency (BIOT)
  • Classic Galactosemia (GALT)
  • Cystic Fibrosis (CF)
  • Galactoepimerase Deficiency (GALE)
  • Galactokinase Deficiency (GALK)
  • Severe Combined Immunodeficiency (SCID)
  • Spinal Muscular Atrophy (SMA)

Having your infant diagnosed with a disorder can be overwhelming. There are numerous support organizations for families who have a loved one living with one of the disorders identified through newborn screening. There are support groups local to Oklahoma. 

 

The links below are a comprehensive list of national support organizations that may benefit your family.

  • What does my baby’s screening result mean?
    • Please contact your infant’s doctor for assistance with understanding your baby’s newborn blood spot screening results. If you have further questions, please call us at 405-426-8310 to speak with a newborn screening nurse. You may also email us at newbornscreen@health.ok.gov.
  • My baby had an out-of-range screening result. Does this mean my baby is sick?
    • The newborn screen cannot diagnosis any infant with a disorder. It simply means your infant may be at a higher risk and that further follow up is needed.  Please speak with your infant’s doctor to determine what steps should be taken next.
  • My baby flagged for a hemoglobin trait, does this mean my baby has sickle cell disease?
    • This does not mean your child has sickle cell disease! If your child was identified with a hemoglobin trait, a repeat newborn screen around 4 months of age is recommended. We may recommend genetic counseling to help you understand how this result impacts your child. Contact the newborn blood spot program for genetic counseling resources.
  • I do not speak English. Are there resources available in my language?
    • Spanish brochures are available upon request. If you need information in a language other than English, please call 405-426-8310 where an interpreter can be used.
  • Do I have to pay for the newborn screening test?
    • The Newborn Screening program does not directly bill families. For further information, please contact the facility where the newborn screen was collected.
  • Does the newborn screen test my baby’s blood type?
    • The newborn screen does not test for blood types.
  • Why do I need a sweat test if my baby’s screen was abnormal for Cystic Fibrosis?
    • The newborn screening panel does not test for all mutations that can cause Cystic Fibrosis. The doctors who take care of patients with this disorder recommend all infants who are at risk for Cystic Fibrosis have a sweat test to rule out having the disease. A sweat test is a painless procedure where the lab collects sweat to measure the amount of salt in it. The sweat test is offered free of charge for any infant with an abnormal cystic fibrosis screen result.
  • How do I get the results of a newborn screen as requested by NCAA so my child can play collegiate sports?
    • If the athlete was born after 2000, an Oklahoma provider or local county health department can obtain the screening results through the newborn screen results portal. If you no longer live in Oklahoma, a medical provider should fax a signed release of information on clinic letterhead to 405-900-7556. Please include the name, date of birth, mother’s name at time of birth and birthing facility. Currently, we are unable to release verbal or physical results to any school or school representative unless a school medical provider is requesting the results. Please note, if the athlete is at least 18 years old, parents or legal guardians are not able to sign on behalf of the athlete or request screening results.
  • Where can I have a newborn screen collected?
    • Newborn screens can be collected at any birthing hospital. This may require your baby’s doctor to send an order to the hospital to collect this screen. Some doctors also collect newborn blood spot screens in the office. Contact your baby’s doctor to determine their procedure. You may also contact your local county health department to collect a newborn screen. Please call ahead to make an appointment.
  • I do not plan to give birth in a hospital. How can my baby get tested?
    • Many midwives offer to collect the newborn screen for you. If they do not, you may contact your infant’s doctor or a local county health department to have a screen collected.

Contact Information:

Mailing Address:
Oklahoma State Department of Health
Newborn Blood Spot Screening Program
123 Robert S. Kerr Ave., Suite 1702
Oklahoma City, OK 73102-6406

Phone: (405) 426-8310
Toll Free: (800) 766-2223
Fax: (405) 900-7556
E-Mail: newbornscreen@health.ok.gov

Disclaimer:  If you need information in a language other than English, please call 405-426-8310 where an interpreter can be used. Spanish brochures are available upon request.