States Missouri

Conditions Screened

Missouri currently screens for 62 conditions

The Missouri Program

Each state runs its program differently, for more detailed information please visit their website here.

Download Brochure

Here is a brochure for the state of Missouri. Brochure >>

What Conditions are Screened For in Missouri?

Hemoglobin Disorders

Lysosomal Storage Disorders

Contacts

Bureau of Genetics and Healthy Childhood

Lori Swartz, RN, ADN
Missouri Department of Health and Senior Services
Bloodspot Follow-Up Contact
PO Box 570
Jefferson City, MO 65102-0570
Phone: 573-751-6266
Fax: 573-751-6185
Email: [email protected]

Newborn Screening Laboratory

Tracy Klug
Missouri State Public Health Laboratory
PO Box 570
Jefferson City, MO 65102-0570
Phone: 573-751-2662
Fax: 573-751-4470
Email: [email protected]

Early Hearing Detection and Intervention

Taylor Kinde, EdD
Missouri Department of Health and Senior Services
PO Box 570
Jefferson City, MO 65102-0570
Phone: 573-751-6266
Fax: 573-751-6185
Email: [email protected]

CCHD Contact

Lori Swartz, RN, ADN
Missouri Department of Health and Senior Services
PO Box 570
Jefferson City, MO 65102-0570
Phone: 573-751-6266
Fax: 573-751-6185
Email: [email protected]

Search Educational Resources

Looking for resources? Check out our Newborn Screening Education and Training Resource Center.

VIEW RESOURCES

About Newborn Screening in Missouri

Program Overview:

Newborn screening refers to screenings performed on newborns shortly after birth to protect them from the dangerous effects of disorders that otherwise may not be detected for several days, months or even years. Missouri law requires all babies born in the state to be screened for certain metabolic, genetic, and endocrine disorders as well as hearing loss and critical congenital heart disease. Whether your baby is born in the hospital or at home, the newborn screening should be done between 24 and 48 hours of age.

Babies who appear healthy and come from healthy families can still have serious medical conditions.  Newborn screening helps health professionals identify and treat conditions before they can cause serious health problems, disability or even death. Most babies identified through newborn screening are treated early and grow up healthy. 

Blood Spot Screening

A small sample of blood is collected from your baby’s heel shortly after birth and is then sent to the Missouri Department of Health and Senior Services State Public Health Laboratory. The results of your baby’s blood screen will be given to your baby’s health care provider and the birthing hospital or midwife. Sometimes, additional testing is needed. If additional testing is needed you will be notified either by your baby’s health care provider, the hospital, midwife, or staff from the Department of Health and Senior Services. If so, it is important to listen carefully and follow directions as soon as possible.

Hearing Screening

All babies receive a safe and painless hearing screening shortly after birth to identify possible hearing loss. Hearing loss is one of the most common birth defects, occurring in 1 to 3 infants per 1,000 born. If hearing loss is not detected and managed early, it can delay speech, language and cognitive development. If the final screening results indicate your baby may have hearing loss, it is important to work with your health care provider to make an appointment with an audiologist to perform a more thorough hearing test before your baby is 3 months old. 

Critical Congenital Heart Disease Screening

Critical congenital heart disease (CCHD) is the name given to specific congenital heart defects. If left untreated, these defects can lead to death or can cause serious developmental delay. CCHD screening is a simple bedside test to determine the amount of oxygen in the baby’s blood. Low oxygen levels can be a sign of CCHD. The test is done using a machine called a pulse oximeter. The pulse oximeter is an infrared light sensor that is gently wrapped around the baby’s hand or foot. Light passes through the skin and tissue and is read by the sensor to estimate the blood oxygen level. The test is painless and takes just a few minutes.

 If the results are “negative,” it means that the baby’s test results did not show signs of a CCHD. This type of screening test does not detect all CCHDs, so it is possible to still have a CCHD or other congenital heart defect with a negative screening result. If the results are “positive” (“fail” or out-of-range result), it means that the baby’s test results showed low levels of oxygen in the blood, which can be a sign of a CCHD. This does not always mean that the baby has a CCHD. It just means that more testing is needed.

How is Newborn Screening Paid for in Missouri?

Currently, a fee of $95 is charged for each newborn screening specimen collection card (initial screen and repeat if necessary). This fee covers the cost of the testing and part of the follow-up costs. This fee is usually covered by third party payers, such as private insurance or government health programs. However, no individual in Missouri will be denied the newborn testing required by law because of inability to pay.

Policies and Resources

Opt-Out:

The goal of the Missouri newborn screening program is to ensure all babies are screened shortly after birth. However, Missouri law does allow parents the right to refuse screening if it conflicts with their religious tenets or practices. All health care providers are required to provide parents with newborn screening educational information that describes both the benefits of screening as well as the risks of not screening. If parents choose to refuse newborn screening after being fully informed, a written refusal will be placed into the child’s medical record and sent to the Missouri Department of Health and Senior Services.

Support for families:

Missouri will provide assistance for families who have children with an amino acid or an organic acid disorder that requires medical formula. The Department of Health and Senior Services provides metabolic formula as a payor of last resort for children who meet medical and financial eligibility requirements. Children five years or under have no income qualification requirements. For children six through 18 years, the amount of assistance to be provided is based on a sliding fee scale. Children who reach 19 years of age and older whose family income does not exceed 185% of the federal poverty level are eligible for metabolic formula assistance. Additional information about metabolic formula assistance can be found at this link.

Financial Eligibility Guidelines are based on the U.S. Department of Health and Human Services Poverty Income Guidelines. All third party payers must be utilized before the Department of Health and Senior Services will consider reimbursement. Private insurers in Missouri may be required to cover many expenses related to these conditions so it is important to contact your insurance provider to see what they will be covering for your child.

The applicant/family must apply for MO HealthNet (Medicaid) benefits to obtain program eligibility. The following website provides information on the Family Support Office (Resource Center) locations: http://dss.mo.gov/.

Storage and Use of Dried Blood Spots:

In accordance with Missouri law, the leftover newborn screening samples will be stored for five years. During this time, the leftover newborn screening samples may be used for anonymous public health studies approved by the Missouri Department of Health and Senior Services. If samples are released for research, the samples will not include any information indicating the child’s identity. The law allows the parent the right to request their child’s specimen to be returned to them after all screening has been completed, to be destroyed after all screening has been completed, or to be stored but not released for anonymous research. To exercise one of these three opt-out options, the parent or legal guardian must write a letter to the State Public Health Laboratory requesting such. They may do this at any time during the five years of storage. If the parent does nothing, the leftover newborn screening sample will be available to be used for anonymous research. At the end of the five years of storage, the leftover newborn screening sample will be destroyed.

To see a copy of the blood spot card used in Missouri click here.

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