Newborn Screening Frequently Asked Questions
What is the purpose of the Newborn Screening Program?
The purpose of the Newborn Screening Program is to test all newborns in North Dakota for early signs of a number of rare, but treatable disorders (as mandated by the North Dakota Century Code, and the Agency Rules).
Why is my baby tested?
Testing helps to ensure that your baby will be as healthy as possible. A simple blood test provides important information about your baby's health that you or your doctor might not otherwise know just by looking at them. The Newborn Screening Program identifies the few infants who may have one of the uncommon birth defects screened for in this program. With early diagnosis and medical treatment, complications from these serious conditions, such as intellectual disabilities, brain damage or even death, usually can be prevented.
How is my baby tested?
All of the tests are performed on one tiny sample of blood obtained by pricking the baby's heel a few days after birth. The blood is allowed to dry on absorbent paper and then is sent to the laboratory for testing.
What if my baby is not born in a hospital?
It is very important that babies born outside of hospitals also be tested, preferably at 24 hours after birth. Parents should arrange with a doctor, hospital or midwife to have the screening done.
What is the chance my baby has a disorder detectable by screening?
The chance that your baby will have one of these disorders is very small. In the rare cases when a disorder is found, early diagnosis and treatment usually can prevent the problems associated with these disorders.
Newborn screening tests provide an early opportunity to detect certain disorders before symptoms appear. However, screening tests are not always accurate and may not detect a disorder. In any case, if your baby does not seem well, talk to your baby's doctor as soon as possible.
But my baby seems very healthy. Are the tests still necessary?
Yes. Most infants with the disorders identified through newborn screening may not show obcious signs/symptoms of disease until damage has already occurred. In each of these disorders there is an "invisible" problem in one of the many chemicals that are produced naturally in the baby's body. Using special laboratory tests, newborn screening can identify the infant who may have of the disorders and can alert the doctor to the need for special care of the infant. Usually this can be done before the problem has time to cause damaging effects.
Who decides which disorders are included in newborn screening?
An Advisory Board, made up of a variety of health care providers, nurses, parents, and patient advocates advises the North Dakota Department of Health about which disorders to include. The list of disorders is approved by the the State Health Council. For a disorder to be included in the list, the following must be true: (1) the disorder is treatable, (2) there is a good test for that disorder, and (3) early medical intervention would benefit the infant.
May I refuse these tests?
In North Dakota, parents/guardians may refuse newborn screening for any reason. Parents/guardians are encouraged to visit with their health care provider about concerns they may have regarding the testing. To refuse testing, parents/guardians must have read and received written information about newborn screening. A signed refusal form must be sent to the ND Department of Health within 6 days after testing was refused.
How are results reported and how will I be notified if my baby needs care?
Your baby's test results will be reported to the hospital where your baby was born. These reports include results of all routine testing. In addition, if you baby's test results indicate that further attention is needed, the hospital where your baby was born, or your baby's doctor, will be notified and will contact you. Please do not assume no news is good news; ask your health care provider for your baby's newborn screening results.
I was called and told that my baby's test needs to be repeated. Does this mean that my baby has a disorder?
Not for certain. There are several reasons why your baby's doctor may have told you that your baby needs to be retested. Some reasons include:
- Unsatisfactory specimen: The quality of the specimen is not acceptable.
- "Too early" specimen: If the blood specimen was collected before your baby was 24 hours old, a second sample should be taken as soon as possible to ensure the laboratory receives a full screen. The best time for detection is between 24 and 48 hours after birth.
- Abnormal test result: An abnormal test result means that a disorder may be present. If the repeat test indicates that further evaluation is needed, your baby's doctor will be notified right away.
Note: Premature or low birth weight newborns are more likely to have abnormal test results on the first specimen even if a disorder is not present.
What are the general benefits and risks associated with the pilot studies?
- The most important individual benefit for your baby is if your baby has one of the disorders, your baby will have the earliest opportunity for detection and treatment to avoid any harm that can occur.
- Other benefits may include your own satisfaction that you are helping to answer important questions that may help other babies.
As with any testing, this testing will have one of two possible results: your baby will have either a normal or an abnormal screening result. Each of these two results has its own risks that you may want to consider:
- If your baby has an abnormal screening result, it is possible that your baby actually does not have the disorder. To be sure, your baby's doctor may recommend further testing by a specialist who may take additional specimens (usually blood or urine) from your baby. Additional testing may cause you to worry, which is a common reaction to receiving any abnormal results. If after further testing, you receive the news that your baby does not have the disorder, your baby's medical record should reflect the update, but you may want to make sure that this happens.
- If your baby has a normal screening result, there is still a chance that your baby has the disorder (i.e., for some reason, the disorder was not detected by the newborn screening test). This risk exists for all forms of screening, including the new screening tests. In any case, if your baby does not seem to be doin gwell, visit your health care provider as soon as possible.
If my baby has one of those disorders, can it be cured?
No, although a treatment does exist, it may be lifelong. Some disorders may require medication or a special diet. Early detection and treatment are extremely important to having a healthy baby.
How can I help the doctor help my baby?
If your doctor asks you to bring your baby in for retesting, do so as soon as possible. If your child has a disorder, follow up 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 doctor. You can also help by notifying your doctor immediately if you move soon after the baby is born. Then if your child should need to be retested, your doctor will know where to reach you.
REMEMBER, TIME IS OF GREAT IMPORTANCE.
The North Dakota Department of Health, Division of Special Health Services, does not assume responsibility for the content obtained from external hyperlinks accessed from this website. Any links to external sources are outside of our domain. Information on external websites does not necessarily reflect the views and opinions of the North Dakota Department of Health or the Division of Special Health Services.