Answers to Frequently Asked Questions
What Is The Newborn
Screening (NBS) Test?
This test is often referred to as
the PKU or heel-stick test. It tests babies for serious disorders and is
usually performed when your baby is 24-48 hours old. Ideally, the specimen should be sent to the laboratory by the fastest way possible to prevent delay.
Why Is The Test
Done?
The test is done to find out if your baby has a disease or
condition for which early treatment can prevent death, mental retardation, or
physical disability.
How Is The Test
Performed?
The test is performed by pricking your baby's heel
and putting a few drops of blood on a special filter paper. The paper is
allowed to dry and then sent to the newborn screening laboratory where several
different tests will be performed.
But We Have No Family History Of These
Disorders . . .
Parents who have no family history
of problems and/or who have already had healthy children can still have
children with these disorders. In fact, most children with these disorders come
from families with no previous history of the condition.
But My Baby Looks
Healthy . . .
Most babies with disorders look
and act normal and seem perfectly healthy. The newborn screening test helps
your doctor catch a problem with your baby before it makes him or her sick.
Most babies that are diagnosed and treated early do well. The earlier
the disorder is detected, the higher the chance of having a good prognosis.
What Is A Retest?
If the result of your child's test is abnormal, a repeat
test or a "retest" is usually required. A request for a retest does
not necessarily mean your child has a disorder, but it is possible. If you are
asked for a retest, it is important that you take your baby for the retest as
soon as possible.
How Will I Know the
Results of My Baby's Test?
Generally, parents are notified of
the test results only if there is a problem. However, it is a good idea to call
your doctor and request the results of the test. This is important to ensure
that your child's test results have not been lost or misplaced.
If your child's test shows an abnormal result, you will be notified immediately
and given directions about what to do next. Follow the directions of your
doctor very carefully. If your child's test is abnormal, additional tests are
usually necessary to verify if your child has the disorder. It is important
that you advise your doctor if you move or change phone numbers soon after your
baby is born in case there is a problem with your baby's test.
If the results of your baby's test are normal, they will be mailed to your
physician approximately two weeks after the test was performed.
Will My Baby Get The Same Test No Matter
Where I Live?
No. Although all states require a
newborn screening test be performed on babies born in their state, each state
determines which disorders will be screened. The newborn screening test is capable of
screening for more than 50 disorders, yet most states screen for fewer than that.
For example, if your child was born in the state of California in 2004 , your baby was screened for 4 disorders. Yet, if your baby had been born in Mississippi, he or she would have been screened for more than 50 disorders. Learn about newborn screening in your state.
Can Newborn Screening Be Performed On Older
Children or Adults?
Yes. Older children also can
be supplementally screened. Contact one of the laboratories that offer supplemental
screening for directions.
Should I Have My Baby Screened
Supplementally?
Yes. In order to prevent damage
from undiagnosed disorders that are not screened through your child's
routine newborn screening, all babies should be
screened through supplemental newborn screening in addition to receiving a
routine newborn screening test unless your state or hospital is screening for all disorders recommended by the Save Babies Through Screening Foundation. Learn whether supplemental newborn screening is recommended for newborns in your state.
How Can I Get My Baby Screened For All
Disorders?
Contact one of the laboratories
below to obtain a parent packet, which contains screening materials and
information for you and your physician. The screening packet should be obtained
several weeks prior to delivery. Be sure that arrangements have been made in advance of your baby's due date for the hospital to draw the additional blood drops at the time of the routine newborn screening. Each of these
laboratories** can provide screening regardless of where you live.
Laboratory that provides screening for all disorders:
PerkinElmer Genetics, Inc.
50+ disorders for $95.35 Toll Free: 1-866-463-26436
Laboratories that
provide screening for some disorders:
**Important
Note:
These laboratories offer tandem mass spectrometry only, thus they can not test
for Biotinidase Deficiency,
Congenital Adrenal Hyperplasia, Cystic Fibrosis, Galactosemia, Hypothyroidism, Sickle Cell Disease and Hemoglobinopathies.
Baylor Medical Center
30+ disorders for $25 (not available in New York state)
Toll Free: 1-800-422-9567Mayo Medical Laboratories
35+ disorders for $57.30 (physician order only)
Toll Free: 1-800-533-1710University of Colorado Health Sciences Center Biochemical Genetics Laboratory
20+ disorders for $25
1-303-724-3826
Simply give the packet to your doctor, and let him or her know you would like to have an extra blood sample drawn at the time of your baby's routine newborn screening. Then, when your baby's routine heel-stick is performed, a few extra drops of blood will be applied to the supplemental screening test. As with your baby's routine screening, if the screening is abnormal, your baby's physician will be contacted immediately. And if the screening is normal, results will be sent through the mail.
What If I Don't Have The Money To Purchase Supplemental Newborn Screening?
If you have health insurance, ask the plan administrator or the insurance company if supplemental newborn screening is covered. The CPT (claim code) for insurance purposes is 83788.
The Save Babies Through Screening Foundation has a limited number of free newborn screening packets available each month for expectant parents who qualify. Click on Packets for Parents for information.
What If My Baby's
Doctor Doesn't Know About Supplemental Newborn Screening?
Because supplemental screening has
not been available everywhere until recently, your doctor may not know about
supplemental screening. Be prepared that you may have to supply your doctor
with information on supplemental screening. Click on the following links
to obtain materials to print out and give to your doctor. A Parent's Guide to NBS, and About Save Babies Through Screening Foundation. If you prefer to order the pamphlets click here.
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