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,
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
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
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
Most states have specific laws regarding newborn screening. In North Dakota, you may refuse newborn
screening. 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.
To access the
newborn screening refusal form click
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:
There is not enough blood to complete all the required
screening tests, or the sample does not work for other reasons.
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.
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.
Premature or low birth weight newborns are more likely to have abnormal
test results on the first specimen even if a disorder is not
What are the general
benefits and risks associated with the pilot studies?
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.
Other benefits may
include your own satisfaction that you are helping to answer
important questions that may help other babies.
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
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.
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.
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.
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