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 treatable disorders (as mandated by the North Dakota Century Code, www.legis.nd.gov/cencode/t25c17.pdf, and the Agency Rules, www.legis.nd.gov/information/acdata/pdf/33-06-16.pdf.)

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. 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 mental retardation 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, which is sent for testing to a laboratory.

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 about 48 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 birth defects screened by this program show no obvious signs of disease immediately after birth. 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, the Newborn Screening Program 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 doctors, nurses and consumers advises the North Dakota Department of Health about which disorders to include. 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?
Most states have specific laws regarding newborn screening. In North Dakota, you may refuse for religious reasons. If you do so, you may be asked to sign a refusal form. This form relieves your doctor of liability for damages that result from a disorder that could have been detected by screening.

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.

I was called and told that my baby's test needs to be repeated. Does this mean that my baby has a disorder?
Not always. There are several reasons why your baby's doctor may have told you that your baby needs to be retested. Some reasons include:

1. Unsatisfactory specimen:  There is not enough blood to complete all the required screening tests, or the sample does not work for other reasons.
2. "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 avoid missing a disorder. The best time for detection is between 24 and 72 hours after birth.
3. 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 called 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?

Possible Benefits

1. The most important individual benefit for your baby is the following: If your baby does have one of the disorders included in the study, your baby will have the earliest opportunity for detection of the disorder and appropriate medical intervention.
2. Other benefits may include your own satisfaction that you are helping to answer important questions that may help other babies.

Possible Benefits

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:

1. 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 results of tests in any screening program. If after further testing, you receive the happy 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.
2. 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 screen). If health-care providers were to rely too heavily on the screening result for diagnosis, it could delay early medical intervention. This risk exists for all forms of screening, including the new screening tests. In any case, if your baby does not seem well, you should talk to your baby's doctor as soon as possible.

If my baby has one of those disorders, can it be cured?
No, not really. It cannot be cured, just as eye color or height can't be permanently changed. However, the serious effects of the disorder can be lessened - and often completely prevented - if a special diet or other medical treatment is started early.

How can I help the doctor to help my baby?
If your doctor asks you to bring your baby in for retesting, do so as soon as possible! If your child does have a disorder, prompt action can be 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.