Newborn Metabolic Screening Program
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FAQ
Please choose from one of the questions below about Newborn Metabolic Screening Program:
- Why is my baby tested?
- How is my baby tested?
- But we've never had any birth defects in our family
- But my Baby seems very healthy. Are the tests still necessary?
- If my baby has one of these disorders, can it be cured?
- Will I be told the test results?
- If a retest is necessary, does that mean that my baby has one of these birth defects?
- How can I help the doctor to help my baby?
- For those babies not born in hospitals or maternity care facilities.
- If my child is found to have a disorder, will my future children have it also?
Why
is my baby tested?
To
help assure that your baby will be as healthy as possible. A
simple blood test provides important information about your
baby’s health that you or even your doctor might not otherwise
know. The Newborn Screening Program identifies the infants who
may have one of the uncommon birth defects for which this program
screens.
Early diagnoses and medical treatment can usually prevent complications such as mental retardation or even death from these serious conditions.
How
is my baby tested?
All
of the tests are performed on one tiny sample of blood obtained
by pricking the new baby’s heel. The blood is allowed
to dry on a special absorbent paper, which is sent to the laboratory
for testing.
All babies are required to be sampled prior to discharge from the hospital or birthing facility. If the first specimen is collected less than 48 hours after birth, a follow-up specimen also is required.
Parent
or guardians of babies needing a second test will be given a
filter paper test kit for that purpose when leaving the hospital
or birthing facility. The second sample should be taken when
your baby is more than 5 but less than 15 days of age. It can
be taken at your doctor’s office, hospital laboratory,
or local health department. After collection, the sample should
be allowed to air dry and then mailed immediately in the envelope
provided.
Important: A sample collected before or after the recommended time period is better than no test at all. If you are not able to arrange testing or have questions, call (907) 269-3499.
Remember: The conditions for which testing is done are treatable. The serious effects of these disorders can usually be completely prevented if treatment is started early enough.
But
we've never had any birth defects in our family. . .
Parents who have already had healthy children don’t expect
any problems with birth defects. They are almost always right. The disorders for which screening is done are not very
common and chances are excellent that your child will NOT have
one of these conditions. The few children who are born with
these problems, however, are generally from healthy families.
By testing every baby soon after birth, we can be sure that
each infant who has a metabolic disorder will be identified
and started on early treatment.
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 produced naturally in the baby’s
body. The Newborn Screening Program uses special laboratory
tests to identify the infant who may have one of the disorders
so that the baby’s doctor can be alerted to the need for
special care for the infant. Hopefully, this can be done before
the condition has had time to cause damage.
If
my baby has one of these disorders, can it be cured?
No, not really. It cannot be "cured," just as eye
color and height cannot be permanently changed. The serious
effects of the disorder can be lessened, however, and often
completely prevented, if a special diet or other medical treatment
is started early.
Will
I be told the test results?
Your doctor or clinic will be informed when the tests are completed.
Parents are notified only if there is a problem. You should,
however, ask about the results when you take your baby to the
doctor for a regular checkup. It is important to remember that
these tests provide information only about some uncommon chemical
disorders. An infant free of these disorders may have other
medical problems for which these methods do not test. It is
very important for your baby to have regular checkups and good
general medical care.
If
a retest is necessary, does that mean that my baby has one of
these birth defects?
Not necessarily. Retesting may be required for a number of reasons.
The most frequent reason is that the first sample did not contain
enough blood to allow for completion of all tests. This does
NOT mean there is anything wrong with your baby.
On the rare occasions when the first tests indicate a possible problem, the results are not considered final; a new blood sample is requested, and the tests are repeated. As a general rule, only when a child’s test is unusual for a second time will the doctor discuss the need for further evaluation.
If you are asked to have your child retested, act quickly in order that repeat tests can be completed and final results obtained while the baby is still very young. It is very important that treatment, if needed, be started as quickly as possible.
How
can I help the doctor to help my baby?
If the doctor asks you to bring in your baby for retesting, DO IT AS SOON AS POSSIBLE! If your child does
have a disorder, prompt action is very important.
If you do not have a telephone, be sure to leave with your doctor the phone number of a friend, relative or neighbor who can contact you. Also be sure to notify your doctor immediately if you move after your baby is born. If your child should need to be retested, your doctor needs to know where to reach you. Remember, time is of great importance.
For
those babies not born in hospitals or maternity care facilities.
It is essential that a blood sample for screening be
taken before the child is 5 days old. This can be done
by a doctor or at a Health Department clinic.
The ideal time for a sample collection is when the baby is 2-4 days old. A sample collected before or after that is better than no test at all.
If
my child is found to have a disorder, will my future children
have it also?
It is possible in some cases that future children also may be
affected. Families with affected children may obtain information
about their future risks from trained professionals with the
Alaska Genetic Services Program. For additional information
about counseling services available in your area, call (907)
269-3430.
As a parent, you can help to assure the health of your children by your cooperation with the Newborn Screening Program.
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