One simple test
can make a
difference for your child.
minnesota newborn screening program
One Simple Test
Can identify all of these disorders.
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2-Methyl-3-hydroxybutyric aciduria
2-Methylbutyryl-CoA dehydrogenase deficiency
3-Hydroxy 3-methylglutaric aciduria
3-Methylcrotonyl-CoA carboxylase deficiency
3-Methylglutaconic aciduria
Arginemia
Argininosuccinate acidemia
Beta ketothiolase deficiency
Biopterin cofactor biosynthesis defects
Biopterin cofactor regeneration defects
Biotinidase deficiency
Carnitine acylcarnitine translocase deficiency
Carnitine palmitoyltransferase deficiency I and II
Carnitine uptake defect
Citrullinemia type I and II
Congenital adrenal hyperplasia
Congenital hypothyroidism
Cystic fibrosis
Dienoyl-CoA reductase deficiency
Galactokinase deficiency
Galactose epimerase deficiency
Galactosemia
Glutaric acidemia type I and II
Homocystinuria
Hypermethioninemia
Hyperphenylalaninemia
Isobutyryl-CoA dehydrogenase deficiency
Isovaleric acidemia
Long-chain hydroxyacyl-CoA dehydrogenase deficiency
Malonic acidemia
Maple syrup urine disease
Medium-chain acyl-CoA dehydrogenase deficiency
Medium-chain ketoacyl-CoA thiolase deficiency
Medium/Short chain L-3-hydroxy acyl-CoA
dehydrogenase deficiency
Methylmalonic acidemia (3 variants)
Multiple carboxylase deficiency
Phenylketonuria
Propionic acidemia
S-Beta thalassemia
Short-chain acyl-CoA dehydrogenase deficiency
Sickle cell disease
Sickle-C disease
Trifunctional protein deficiency
Tyrosinemia type I, II, III
Very long-chain acyl-CoA dehydrogenase deficiency
What is newborn screening?
Your baby’s health is important.
Your hospital and the
Minnesota Department of
Health work together to make
sure all babies born in
Minnesota are as healthy as they
can be.
Minnesota law requires that
hospitals, doctors, and
midwives give every baby the
opportunity to receive newborn
screening. When your baby is
24 to 48 hours old, hospital staff will take a few drops of
blood from your baby’s heel. This is safe and easy to do.
The hospital will send a card with the drops of blood to
the Minnesota Department of Health to test your baby’s
blood for more than 50 disorders.
The hospital will do a hearing test while your baby is
sleeping. The test will check for hearing loss in the range
where speech is heard.
Why is newborn screening
important?
Newborn screening finds problems early.
Almost every day, a baby
is born in Minnesota with
a hidden, rare disorder
that can be found by
newborn screening. These
babies seem healthy at
birth, but they need
treatment right away.
Finding these babies early and treating them before they
show signs of sickness can prevent serious permanent
problems or even death.
Newborn hearing screening can find babies before
they show delays in speech and language development.
Babies with hearing loss may still respond to loud noises
like hand clapping. Without testing, hearing loss can be
missed.
Will my baby be screened?
Minnesota law provides the opportunity for every baby born
in Minnesota to be screened for over 50 hidden,
rare disorders as well as hearing loss.
Some parents may have concerns about having their baby
screened. If you have concerns, talk to your health care
provider about the following options.
•
You have the option to not receive the life-saving
benefits of newborn screening, but the risks of not
screening your baby are very serious. Without screening, your baby could die or have permanent and severe health problems.
•
You have the option to still receive the benefits
of newborn screening, but you may choose to have the screening results and/or the remaining blood specimen destroyed.
*If you choose either of these options, you must sign a form.
More information and opt-out forms can be found at
www.health.state.mn.us/newbornscreening
** Private testing is available. You must arrange for this
testing prior to birth. The hospital will not arrange for private
testing. This option may lead to delayed results.
What will my baby
be tested for?
Your baby will be tested for more
than 50 disorders.
The Minnesota Department of
Health tests for disorders that:
• affect how the body breaks down
proteins (such as PKU)
• cause hormone problems (such
as congenital hypothyroidism)
• cause blood problems (such as
sickle cell disease)
• affect how the body makes
energy (such as MCAD)
• affect breathing and getting nutrients from food (such
as cystic fibrosis)
• affect hearing
How can I get my
baby’s results?
At one of your baby’s first check-ups, ask your baby’s
doctor for the newborn screening results.
What happens if the result is
positive?
Newborn screening finds babies who are at risk
for having a condition or disorder.
If your baby has a positive
newborn screen, your baby’s
clinic will call you and explain the
next steps. A baby who has a
positive newborn screen needs
additional testing. To make sure
you get your baby’s results as
soon as possible, let the hospital
know which clinic will be caring
for your baby.
Some babies need to have newborn screening repeated
because their sample could not be tested properly or the
result is borderline. If your baby needs to be checked
again, your baby’s clinic will call you to set up the repeat
test. Some babies need to have their hearing rechecked.
If your baby doesn’t pass the hearing screen, further tests
are needed.
If your baby needs more tests, do not wait. It is
important to do them right away.
What if my baby has
a problem?
The disorders screened for are treatable.
If your baby has one of the disorders found through
newborn screening, there is help. Your child will need
continual medical care to achieve a healthy and long life.
Treatment, such as medicines or changes in what your
baby eats, can help your baby’s
growth and development.
Your baby will also need to see a
special doctor that can help your
baby start life healthy.
If your baby is found to have a
hearing loss, early access to
language is important. You and
your baby will need to work with
special doctors, educators, and
other professionals to find a communication plan that
works best for your baby and family.
Parent resources and more information about the
newborn screening disorders, problems caused by the
disorders, and available treatments can be found on the
Minnesota Department of Health web site at
www.health.state.mn.us/newbornscreening.
What do I need to know about
Newborn Screening?
Newborn screening helps protect every
baby’s health.
• Newborn screening is
the process of testing
babies for over 50
hidden, rare disorders
and hearing loss.
• Newborn screening
is the only way to tell if
newborns are affected,
since these conditions
cannot be seen at birth.
• Minnesota law requires all newborns to be screened at
birth. Your baby’s blood will be tested unless you refuse in
writing.
• Newborn screening samples will be kept unless you
refuse in writing. Anonymous samples may be used to
make sure the laboratory is doing a good job with testing
or to develop new tests to screen for more disorders so
even more babies can benefit from newborn screening.
• If the results are positive, your baby’s clinic will call you.
Otherwise, ask your baby’s doctor for your baby’s
newborn screening results.
• You can protect your baby’s health with newborn
screening - all of the disorders screened for in Minnesota
are treatable.
Please remember:
At one of your baby’s first check-ups,
ask the doctor for your
newborn screening results.
minnesota newborn screening program
P.O. Box 64899
St. Paul, MN 55164-0899
1-800-664-7772
(651) 215-8980 TDD
Email: [email protected]
www.health.state.mn.us/newbornscreening
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Printed on recycled paper.
IC#141-1543 (English)
(07/2009)