What Conditions are Screened For in North Dakota?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Organic Acid Conditions
About Newborn Screening in North Dakota
The purpose of the Newborn Screening Program is to test all newborns in North Dakota for early signs of a number of treatable conditions as required by North Dakota law. The testing is performed by taking a few drops of blood from a baby’s heel a few days after birth. The blood is placed on a blood spot card and is sent to a laboratory in Iowa for testing. The North Dakota Newborn Screening Program (NDNSP) has designated the University of Iowa State Hygienic Laboratory (SHL) as the central screening laboratory for the program. The North Dakota medical consultants work closely with the Iowa Newborn Screening Program staff to assist health care providers in North Dakota to confirm or rule out a newborn’s diagnosis and recommend treatment and follow-up care for infants.
This simple blood test provides important information about your baby's health that you or your health care provider may not see just by looking at them. Babies with these disorders may look and act like a healthy newborn, but may have a serious medical condition that could cause serious illness, disability or death. With each of these conditions there is an "invisible" problem in one of the many chemicals that are produced naturally in the baby's body. By using special laboratory tests, infants who have a condition may be identified early and the health care provider is notified of a potential condition immediately. With early diagnosis and treatment, complications from these serious conditions can usually be prevented.
With newborn screening, your baby will have one of two possible results: normal or abnormal screening result. If your health care provider asks you to bring your baby in for follow-up testing, do so as soon as possible. A “retest” is not the same as saying your child tested positive for a condition, as many factors may have contributed to this abnormal result. However, if the second test indicates your child may have a condition, prompt action is very important. If you don't have a telephone, it will be helpful to leave the phone number of a friend, relative or neighbor with the health care provider before you leave the hospital. Notify your health care provider immediately if you move soon after the baby is born.
How is Newborn Screening Paid for in North Dakota?
As stated by law the screening laboratory, which is selected by the department, may charge fees for necessary services. The current newborn screening fee is $75.00 and the SHL bills the facilities, who in turn bill the third party payers. The SHL does not charge for repeat screens at this time.
Policies and Resources
While it is highly discouraged, a parent may refuse for any reason to have their newborn tested. Prior to refusing, the parents must have received written information about newborn screening. Parents will need to complete a refusal form, which can be found on the NDNSP website. A copy of the refusal form must be sent to the NDDoH within six days after testing was refused.
Support for families:
One of the concerns some parents have after learning about their child’s condition is the cost of treatment. Fortunately, North Dakota provides various programs to help ease the financial burden on families and individuals living with these conditions. After diagnosis, the North Dakota Department of Health (NDDoH) is available to refer individuals or families to public and private health care providers that can assist in long-term follow-up services.
One of the most expensive aspects of providing for a child or individual with a metabolic condition is the purchase of medically necessary foods that are specifically tailored to the needs of those living with the condition. Special Health Services (SHS) provides medical food and low-protein modified food products to individuals with Phenylketonuria (PKU) and Maple Syrup Urine Disease (MSUD). SHS provides medical food at no cost to males under age 26 and females under age 45 who are diagnosed with PKU or MSUD, regardless of income. If an individual with PKU or MSUD is older than the limits for free medically necessary food, SHS offers the products for purchase at cost, regardless of income. For more information, contact
Special Health Services
North Dakota Department of Health
600 East Boulevard Avenue, Dept. 301
Bismarck, ND 58505-0200
Phone: 701.328.2436 or 800.755.2714 (TTY: 800.366.6888)
Email Address: email@example.com
In addition to the government-sponsored programs, all private insurers in North Dakota are required to cover the cost of medical foods and low protein modified food products as part of their prescription drug coverage. The insurance company will cover up to $3,000 in medical food costs the same way they cover your prescriptions under your plan, meaning there may be a copay or similar small fee. However, if the individual is eligible to have their medical foods or low-protein modified food products covered by a state program, such as SHS mentioned above, the private insurance company is not required to also cover the same services since they are available from the state.
Storage and Use of Dried Blood Spots:
After testing, the dried blood spot cards are returned to the North Dakota Department of Health and are stored at a secure location in North Dakota. The blood spot cards are destroyed after your child turns 18 years old.
Families may benefit from having their baby’s dried blood spot card stored. If a child gets sick, the blood spot can give an idea if something at birth made the child sick. A blood spot may also be used to identify a missing or deceased child or if the parents request information for future pregnancies. At no time would any research be done on your baby’s blood spot card without parental consent.
If you would like your baby’s blood spot card returned to you and not be stored, please complete the request form that can be found on the Newborn Screening Program website or ask your health care provider for more details. Storage, destruction, and further testing would be your responsibility if the card is returned to you.