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Programs & Services

Iowa HHS provides oversight for several different programs relating to inherited conditions. If you have any questions about any of our programs call 1-833-496-8040.

Notice: Iowa Newborn Screening Program fee increase

Maternal Prenatal Screening Program

The Iowa Maternal Prenatal Screening Program works with prenatal health care providers to offer prenatal testing to women s to see if the baby has an increased chance of having certain birth defects. For most babies, it will show low chance. Information from the screening may help inform decisions about special care the baby may need once it is born, so the baby can have the best start possible.

Top things for you to know about the maternal screening program:

  • The screening tests primarily detect Down syndrome, Trisomy 18 and neural tube defects and are available to all women during pregnancy.
  • The screening is typically done in two stages. The first is during the first trimester (first 12 weeks) of pregnancy and involves an ultrasound and a blood sample, while the second is done between 15 – 20 weeks of pregnancy and involves another blood sample.
  • A screen-positive result does not necessarily mean that your baby has Down syndrome, Trisomy 18 or a neural tube defect, only that there is an increased chance for one of these problems.
  • A screen-negative result provides reassurance but does not guarantee that your baby is healthy, only that there is a decreased chance for Down syndrome, Trisomy 18 and open neural tube defects.
  • With a screen-positive, you will be offered an ultrasound and may be offered a diagnostic test such to find out if the developing baby has a chromosome abnormality or birth defect.
  • If you are too far along for the first screen, a result may still be calculated using just the second screen.
  • If you miss the second screen, a result may still be calculated using the information from the first screen, though this alone cannot screen for open neural tube defects.
  • An integrated, two-step approach is a more effective screen for Down syndrome and Trisomy 18 than either screens alone.
  • Even though most babies will be healthy, the period of screening and testing can be a stressful time. If a problem is found you will need support and guidance.

Want to learn more? Check out this maternal screening pamphlet. You may also call the Iowa Maternal Prenatal Screening Program at 319-356-3561. 

Cytomegalovirus (CMV)

Cytomegalovirus (CMV) is a common virus that infects people of all ages. Most CMV infections are "silent," meaning the majority of people who are infected with CMV have no signs or symptoms, and there are no harmful effects.

However, when CMV infections occurs during a woman's pregnancy, the baby can become infected before birth. CMV infection of the baby before it's born is called congenital CMV, or cCMV. When this happens, the virus can get transmitted to the unborn baby and can potentially damage the baby's brain, eyes, and hearing.

About 1 out of every 5 babies born with cCMV will develop permanent problems, such as hearing loss or developmental disabilities.

The best way to protect your baby is to protect yourself

Since the CMV is generally passed from the infected person to others through direct contact with body fluids, such as saliva, take these steps:

  • Wash your hands often with soap and water for 15-20 seconds, especially after diaper changes, feeding a young child, wiping a child's nose or drool, and handling a child's toys.
  • Don't share food, drinks, eating and drinking utensils, or a toothbrush with a child.
  • Do not put a child's pacifier in your mouth.
  • Avoid contact with a child's saliva when kissing or cuddling.
  • Use soap and water or a mild disinfectant to clean toys, counter-tops and other surfaces that may have a child's saliva or urine on them.

Iowa Neuromuscular and Related Disorders Program

Regional Genetics Consultation Clinics

Iowa Registry for Congenital and Inherited Disorders

Stillbirth Surveilance and Prevention