Will My Baby Require Every Test Can I Opt Out Of Newborn Screening Tests
All 50 states and the District of Columbia require a newborn blood screening for at least 21 disorders, with many states screening newborns for the 61 disorders suggested by the HHS and sometimes a few additional ones.
Check with your practitioner or your local board of health to find out what tests are done in your state, or look them up online at Baby’s First Test .
If youre concerned, discuss your fears at a prenatal visit dont wait until delivery day to speak up. You do have the right to opt out of any test or procedure, but you will need to sign paperwork documenting your decision.
In some cases, the hospital might inform the states department of child services that youve decided to forgo the recommended screening.
Keep in mind, although most of these conditions are very rare, they can be life-threatening if they go undetected and untreated. Testing is inexpensive, and in the very unlikely event that your baby tests positive for any condition, the pediatrician can verify the results and begin treatment immediately, making a huge difference in the prognosis.
It’s in your child’s best interest to get all the screenings your pediatrician and hospital recommend.
When Newborn Screening Needs To Be Repeated
Some babies need to have their newborn screening tests repeated.
Newborn screening often needs to be repeated for the following reasons:
- There isnt enough blood to perform the screening test.
- Your newborns first screening test did not give a clear result or the result was just outside the normal range.
- Your newborn was born prematurely and received donor blood transfusions.
- Your newborn was born prematurely and was fed before starting regular breastmilk or formula-feeding.
Your hospital or midwife will contact you if your baby needs to be tested again. If youre asked to take your baby for a repeat test, its important to do so as soon as possible.
Informed Parents Informed Choices
Health care providers are responsible for ensuring that all babies born in Ontario are offered newborn screening. This screening identifies babies who need more testing. It does not provide a diagnosis. Screening is considered to be the standard of care for every baby but is not mandatory. Most families want to have their baby screened. However, some may decide to decline. Health care providers should discuss this decision with parents, document this in the baby’s medical record and complete the decline form on the newborn screening card.
Please note that personal health information will be shared between the health care providers involved in newborn screening and diagnosis so babies who screen positive receive appropriate care and follow-up. As with any health information, families may choose not to share this information. In this case, they should be encouraged to discuss the decision with their health care provider or contact NSO directly. NSO is committed to keeping samples and related health information safe and confidential by following the rules set out in law about their collection and use.
After testing is finished, samples are stored in a secure facility as part of a childs medical record. NSO may use the samples to ensure the quality of the laboratory tests and the newborn screening system. A sample may also be needed by a childs doctor to run extra tests in the future or to improve or develop new NSO tests.
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A Congenital Heart Disease Screening
The Centers for Disease Control and Prevention also recommends, and some states require, screening tests soon after birth for congenital heart defects. This condition, which affects 1 in 100 babies, can lead to disability or death if not caught and treated in time.
Happily, when a baby gets a diagnosis and treatment early, those risks are reduced significantly and, in most cases, completely.
What Conditions Does Newborn Screening Look For
In Australia, newborn screening covers at least 25 conditions. The most common are:
There are other conditions that are tested only in some Australian states and territories. For example, and
You can ask your child and family health nurse or midwife about the conditions covered by newborn screening in your hospital or community.
There are some conditions and disorders that newborn screening doesnt cover. Let your doctor or nurse know if you have a family history of any disorders or conditions.
Newborn screening checks for rare disorders and conditions. Most children with these disorders come from families with no previous history of the disorders.
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Why Do We Screen
Babies with these conditions appear normal at birth. It is only with time that the conditions affect the babys brain or physical development or causes other medical problems. By then the damage may be permanent. Early diagnosis and treatment can result in normal growth and development and can reduce morbidity and mortality.
The Connecticut Newborn Screening Program
The Connecticut Newborn Screening Program is a public health program that screens all babies born in the state for many serious but treatable metabolic and genetic disorders.
While most babies are born healthy, some babies are born with serious but treatable medical conditions. Your baby will receive three different screening tests while in the hospital:
This website is supported by the Health Resources and Services Administration of the U.S. Department of Health and Human Services as part of an award totaling $150,000 with 0% financed with non-governmental sources. The contents are those of the author and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government. For more information, please visit HRSA.gov.
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Newborn Screening And Home Births
Even babies who are not born in a hospital are required to have newborn screening. If a home birth is planned, the licensed midwife may be qualified to complete the newborn screening blood test and hearing screen. If newborn screening cannot be completed in the home, parents should bring the infant to a hospital or clinic for the newborn screening blood test within a few days of birth. A hearing screen should also be scheduled with the babys health care provider at no later than one month of age.
If One Of Your Children Has A Health Condition Will Another Have It Too
Many of the health conditions found by newborn screening are inherited. Inherited means something that is passed from parent to child through genes. Genes are a part of your bodys cells that store instructions for the way your body grows and works.
When one child in a family has an inherited health condition, the chance of a brother or sister having the same condition is higher than if no child in the family has the condition.
If you have a child with a health condition and you want to have another baby, talk to your health care provider or a genetic counselor. A genetic counselor is a person who is trained to help you understand about genes, birth defects and other medical conditions that run in families, and how they can affect your health and your babys health.
Sometimes hearing loss is not inherited. For example, it can be caused by an infection during pregnancy. In this case, it usually doesnt happen in another pregnancy.
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What Happens To Leftover Blood Spots
After Newborn Screening is completed, the small amount of dried blood that remains on the filter paper card is saved in case it needs to be retested or used to adjust the instruments to assure proper performance for testing. No blood spots collected in New Mexico will be used for research. All blood spots are destroyed at 18 months.
Core And Secondary Screening
As of July 2018, there are 35 core conditions that the ACHDNC recommends be included in routine screenings and 24 secondary conditions that should be considered based on the availability of effective treatments.
Very long-chain acyl-CoA dehydrogenase deficiency
Long-chain L-3 hydroxyacyl-CoA dehydrogenase deficiency
Trifunctional protein deficiency
Glycogen storage disease type II
Congenital hearing loss
Spinal muscular atrophy due to homozygous deletion
Carnitine palmitoyltransferase type I deficiency
Carnitine palmitoyltransferase type II deficiency
Carnitine acylcarnitine translocase deficiency
Biopterin defect in cofactor biosynthesis
Biopterin defect in cofactor regeneration
Tyrosinemia type II
T-cell related lymphocyte deficiencies
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Newborn Screening: What To Expect
When newborn screening is doneNewborn screening is done 48-72 hours after your babys birth.
Consent for newborn screening Your doctor or midwife will talk with you about newborn screening and ask for your permission to do the test. If you consent, youll be asked to sign a form or a newborn screening card.
If you dont consent to newborn screening, youll be asked to sign a Decline of Screening form. If your baby becomes ill at some stage, its important to tell your child and family health nurse or GP that your baby didnt have newborn screening.
You might also be asked whether blood from your babys screening test can be used in the future for research. Consenting to this is your choice. You can say no. If you agree to your babys blood being used in research, your babys identity will be kept confidential from researchers.
Taking babys blood sampleThe midwife will warm your babys heel . The midwife will prick your babys heel and collect a few drops of blood on special filter paper. The filter paper is dried, then sent to a laboratory where your babys blood is tested for different conditions.
If youre discharged from hospital early, your local child and family health nurse or midwife can collect your babys blood sample at your home.
The date of newborn screening should be recorded in your babys child health and development record book.
Costs of screening Newborn screening is free. You dont have to pay.
What Conditions Are Included On The Newborn Screening Panel
The Illinois newborn screening panel currently includes the following: amino and urea cycle disorders, biotinidase deficiency, congenital adrenal hyperplasia, congenital hypothyroidism, cystic fibrosis, fatty acid oxidation disorders, galactosemia, lysosomal storage disorders, organic acid disorders, phenylketonuria, severe combined immune deficiency, sickle cell disease, hearing loss and critical congenital heart disease.
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Newborn Blood Spot Test
The newborn blood spot test involves taking a small sample of your baby’s blood to check it for 9 rare but serious health conditions.
When your baby is about 5 days old, a healthcare professional will prick your baby’s heel and collect a few drops of blood on a special card. This is sent off for testing.
The heel prick may be uncomfortable and your baby may cry, but it’s all over very quickly.
Before Newborn Screening: Questions To Ask
Many parents have questions about NBS. Following is a list of questions that you may want to ask your health care provider or your babys health care provider before your babys birth, before your babys screening, or while your baby is being screened.
- Will I need to ask for my baby to be screened?
- When does NBS happen?
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Newborn Screening For Preterm Low Birth Weight Nicu Or Sick Newborns
Babies born preterm, sick or with a low birth weight often have certain medical problems that require special treatments. These treatments or procedures can affect the newborn screening results. These infants may require a special process for newborn screening. For example, many preterm, sick or low birth weight infants require more than one blood draw throughout their hospital stay to ensure accurate testing. To find out more about your hospitals protocol, speak with your obstetrician or the babys doctor.
How Are Screening Costs Covered
Newborn screening test costs vary by state because individual states finance their newborn screening programs in different ways. Most states collect a fee for screening, but health insurance or other programs often cover all or part of it. Babies will receive newborn screening regardless of health insurance status. For more information regarding the cost of newborn screening in your state, contact your states newborn screening coordinator. Find the contact info for your state coordinator by searching for your state here.
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Which Screening Tests Are Offered
Screening varies by state. Tests offered can change as technology advances and treatments improve. Although there are national recommendations for newborn screening, it is up to each state to decide which tests to include.
Newborn screening includes tests for:
Metabolic problems. Metabolism is the process that converts food into energy the body can use to move, think, and grow. Enzymes are special proteins that help with by speeding up the chemical reactions in cells. Most metabolic problems happen when certain enzymes are missing or not working as they should. Metabolic disorders in newborn screening include:
- medium chain acyl CoA dehydrogenase deficiency
Hormone problems. Hormones are chemical messengers made by glands. Hormone problems happen when glands make too much or not enough hormones. Hormone problems in newborn screening include:
Most states also screen for hearing loss and critical congenital heart disease, which are not done by testing the blood.
Talk to your doctor if you think your baby may need other newborn screening tests not offered through your state program.
Baby Screening And Homebirths
Irrespective of where the baby is born, it is very important to get the screening done. If you plan to deliver the baby at home or if your baby is born at home, you should book an appointment with your doctor/preferred hospital where this service is available. As the timing of the tests, especially blood test is very critical, it is ideal to have the appointment taken in advance on the basis of expected delivery date.
The necessary equipment for performing the tests might not be available in too many hospitals. Hence, it is important to identify and book a slot with the hospital in advance.
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How Should You Prepare Baby For The Screening
Newborn screening procedures are simple and do not require any special preparation on the part of the parents or the baby. Most screening tests will happen before the mother and the child are discharged and in complete supervision of professional doctors.
It is advised to nurse/feed the baby before and/or after the procedure and ensure that the baby is comfortable and warm while the procedure is being carried out.
At the time of the blood test, parents might choose to hold and comfort the child while the sample is drawn out of the childs heel as this will be painful. For other tests, it is best to put the baby to sleep so that necessary instruments can be easily attached to the baby with ease.
What If Newborn Screening Results Arent Normal
Most newborn screening results are normal. If your babys screening results arent normal, it may simply mean she needs more testing. Your babys provider then recommends another kind of test, called a diagnostic test, to see if there is a health problem. If the diagnostic test results are normal, no more testing is needed. If the diagnostic test results are not normal, your provider can guide you about next steps for your baby.
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Understanding Results From Newborn Screening
Results from newborn screening for CF can take longer than one week after a blood sample is collected. Ask your baby’s primary health care provider when you can expect results.
When high IRT levels are detected in the blood, the results of the newborn screening are said to be positive. A positive newborn screening result tells you that your baby might have CF.
What If I Go Home With My Baby Less Than 24 Hours After Birth
A blood sample will still be taken in the hospital before leaving. Screening detects over 80% of disorders at even less than 24 hours of age. Early detection is important if your child has one of these disorders. You will get instructions on how to have the sample repeated within 2 weeks. The purpose of the second sample is to double check the few disorders that can be missed on the first screen.
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Newborn Screening In Canada: What To Expect
From Apgar to the heel prick test, everything you need to know about your newborn’s procedures.
The hours and days after your newborn arrives will bring many firsts, including her first medical test. Knowing exactly whats being doneand whywill help bring you peace of mind.
The specific procedures performed will depend on which province or territory you live in. But, generally, immediately following your babys birth, your doctor or midwife will conduct the Apgar test to assess her overall health. Shell be scored on five factors by doing a visual assessment of skin colour, listening to her heart and lungs, and checking reflexes and muscle tone. Within the first hour, your little one will also receive a vitamin K injection in her thigh, which assists in blood clotting . Shes also given an antibiotic eye ointment that prevents her from potentially contracting an eye infection from gonorrhea or chlamydia when passing through the birth canal.
Babies in Ontario are now screened for congenital heart problems 24 to 48 hours after birth using a probe that wraps around a babys finger, hand or lower limb to detect oxygen levels in the blood. About 12 in every 1,000 babies are born with congenital heart disease.
A version of this article appeared in our November 2014 issue with the headline Testing 1,2,3, p. 50.