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Screening Basics

How is newborn screening done?

Each baby born in Indiana will have the following three (3) screens performed, unless the parent refuses for religious reasons and completes a Religious Waiver: 

Heel Stick / Bloodspot Screening - Before every baby goes home from the nursery, he or she has a small amount of blood taken from his or her heel. This is called the heel stick. The blood is collected on the newborn screening card and referred to as the dried blood spot (DBS) sample.The DBS sample that is collected is used to screen for over 60 rare genetic conditions. If anything concerning is found, the Newborn Screening Laboratory contacts the baby’s doctor. 

Pulse Oximetry Screening - Since January 1, 2012, every baby born in Indiana has been required to be screened for critical congenital heart disease (CCHD) through pulse oximetry,  unless parents refuse screening due to their religious beliefs.

Hearing Screening - All babies also receive a hearing screen to identify possible hearing loss. This is called the Universal Newborn Hearing Screening (UNHS).  For more information about UNHS or hearing loss, please click here.


 

Heel Stick/Bloodspot Screening

Heel stick screening is a quick and simple method of obtaining a sample of a newborn's blood. This blood, called the bloodspots, is sent to the newborn screening laboratory where it is then analyzed for over 60 rare, life-threatening genetic conditions.

 

Pulse Oximetry Screening

Pulse oximetry (pulse ox) is a quick, non-invasive, gentle test that measures how much oxygen a baby has in his or her blood.  Pulse oximetry is used as part of newborn screening to determine how healthy a baby’s heart & lungs are. 

Babies who have low oxygen levels, less than 95%, may need to be evaluated for critical congenital heart disease (CCHD), sepsis, respiratory problems, or other conditions detrimental to the baby's health.

Critical congenital heart disease (also called CCHD) is a broad term that refers to several different heart defects. A heart defect occurs when a baby's heart does not develop correctly. Seven (7) different CCHDs can be detected by pulse oximetry screening. A baby born with one of these heart defects often has a low amount of oxygen in their blood. All of these heart defects require treatment, often involving surgery, to correct them soon after birth. If a baby has CCHD and does not receive treatment shortly after birth, the baby has a higher chance of developing serious health outcomes, including death. 

It is important for parents to know that pulse oximetry cannot identify every child with CCHD. Most babies who pass the pulse oximetry screen will not have CCHD. However, parents should know the signs of CCHD: blue color to the skin, fingernails or lips, fast breathing and/or poor feeding or weight gain. If you notice any of these signs, please contact your baby's doctor.

 

Hearing Screening

Simple tests can be used to screen a baby’s hearing immediately after birth. All babies can and should have their hearing screened before they leave the hospital (or before they are one month of age). It is important to find hearing loss early, so the baby has the best chance possible to learn to communicate.

By including hearing screening in Indiana’s newborn screen, infants with hearing loss can be identified before 3 months of age and obtain early intervention services by 6 months of age. Each year in the US, approximately 2-3 out of every 1,000 children are born with permanent hearing loss. Without newborn hearing screening, most of these children would not be identified with hearing loss during infancy. 

The hearing screening portion of newborn screening is managed and followed-up by the Early Hearing Detection and Intervention (EHDI) program. Visit the EHDI program website for more information about hearing screening.


 

What happens to the blood that is collected from my baby during heel stick screening?

The dried blood spot (DBS) is collected from the heel stick and is transported to the state-contracted NBS Laboratory. A portion of the DBS is punched out and analyzed for the specific group of conditions listed on the Indiana Newborn Screening Panel. **Indiana’s newborn screening law allows for the remaining portion of the DBS to be made available for de-identified medical research purposes such as calibrating the newborn screening lab's equipment. Important information on what may cause a disease or impact an individual’s health can be learned through the use of the DBS in medical research.

IDOH requires written consent from parents or guardians of newborns to opt in or out of storage of the DBS. The parent or guardian must select their intent to opt in or out of storate, and sign the consent card, regardless of whether they are opting in or out of DBS storage. 

Cards for any child born before June 1, 2013, have not been made available for medical research and will be destroyed in a secure manner. Other cards will be destroyed on a schedule in accordance with the three (3) year retention policy.

If a parent consents to storage of their newborn's DBS, the DBS is stored and made available for de-identified medical research purposes for a period of three (3) years only, and then destroyed. All DBS that are stored will remain de-identified, which means no identifiable information will ever be released.

If a parent does not consent to storage of their newborn's DBS, the DBS is kept for six (6) months to ensure additional screening for the infant is not necessary, and then the DBS is destroyed.

If a parent who previously consented to storage of the DBS would like to have the DBS destroyed, they may complete and send this form any time within the DBS storage period, which spans three (3) years from the date the DBS was collected, which is usually a day or two after the birth of your child.

If a parent who previously did not consent to storage of the DBS would now like to have the DBS storedthey must complete and send this form within six (6) months from the time the DBS was collected, which is usually a day or two after the birth of your child. Otherwise, if the parent does not enter this request prior to the six (6) months, the DBS will have already been destroyed. 

If you have any questions regarding the status of your child’s DBS, please do not hesitate to contact the Indiana Genomics and Newborn Screening Program.

Please direct all requests and questions to:
Genomics and Newborn Screening Program
2 North Meridian Street, Indianapolis, IN 46204
Fax: 317-234-2995
Phone: 888-815-0006
ISDHNBS@isdh.IN.gov

 

 

 

 

 

Page last revised 03/12/2020 by JHaller