Information for Families
Each baby born in Indiana will have three (3) screens performed before the baby goes home from the hospital. Indiana allows parents to refuse one, two, or all three parts of newborn screening due to religious beliefs only. Any family who refuses screening for their baby must fill out and sign State Form 54102 or the Spanish version State Form 57106.
Heel Stick / Bloodspot Screening
Heel Stick / Bloodspot Screening - A 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 50 rare, life-threatening genetic conditions.
Critical Congenital Heart Disease (CCHD) Screening
CCHD screening is a quick, non-invasive, and gentle test that measures how much oxygen a baby has in their blood and how healthy a baby’s heart & lungs are.
Babies who have low oxygen levels, less than 95%, may need to be evaluated for CCHD, sepsis, respiratory problems, or other conditions detrimental to the baby's health.
CCHD is a broad term that refers to several different heart defects. Seven different CCHDs can be detected by pulse oximetry screening. 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. Most babies who pass the pulse oximetry screen will not have CCHD.
Hearing Screening - All babies receive a hearing screen to identify possible hearing loss. This is called the Universal Newborn Hearing Screening (UNHS).
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. The hearing screening portion of newborn screening is managed and followed up by the Early Hearing Detection and Intervention (EHDI) program.
Frequently Asked Questions
- Will the newborn screening heel stick hurt my baby?
Babies may experience some brief discomfort when being pricked on the heel, but it heals quickly and leaves no scar. The following suggestions may help make the screening experience more comfortable for you and your baby:
- Breastfeed the baby during the heel stick.
- Hold the baby during heel stick.
- Make sure the baby is warm and comfortable during the heel stick
- Is a PKU test the same as newborn screening?
Yes. Some health professionals will use the term PKU test as a synonym for newborn screening; however, the term "PKU test" can be misleading. Every state screens for phenylketonuria (PKU), a rare metabolic disorder, but they also screen for many other conditions. Indiana screens for over 50 conditions including PKU.
- 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 run through multiple laboratory machines to screen 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 the storage of the DBS.
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 have been destroyed on a schedule in accordance with the three (3) year retention policy.
- If parents or guardians consent to the 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 parents or guardians do not consent to the 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 parents or guardians who previously consented to the storage of the DBS would now like to have the DBS destroyed, they may complete and send State Form 55650 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 the child.
- If parents or guardians who previously did not consent to the storage of the DBS would now like to have the DBS stored, they must complete and send State Form 55651 within six (6) months from the time the DBS was collected, which is usually a day or two after the birth of the child. Otherwise, if the parent does not enter this request prior to the six (6) months, the DBS will have already been destroyed.
- Accessing Results
Parents or guardians without access to a medical provider should fill out the Genomics and Newborn Screening Access Request Form and email the completed form to NewbornScreening@health.in.gov along with a scanned copy of a valid form of identification.
The process to request results without a provider can take up to 60 business days as it must go through a legal review process. It is recommended to have a provider request on your behalf when possible as this only takes up to 10 business days for patients born after 2012, and up to 30 business days for patients born before 2012.
- Understanding Results
Parents should be told by hospital staff whether their newborn has passed or failed the critical congenital heart disease (CCHD) screen and hearing screen before they leave the hospital. Since the heel stick has to be sent to the Newborn Screening Laboratory and analyzed, it usually takes about 5 to 7 days before results are available. Parents should be given the results of their infant's heel stick screening during their first pediatric well-child appointment.
Heel Stick Screening
Pass: The newborn did not screen positive for any of the 50+ conditions screened through the heel stick. No further screening is needed at this time.
Not pass: If the newborn's results are abnormal (presumptive positive), the newborn showed signs that they may have a genetic condition. This information will be communicated to the newborn's primary care provider and the birthing facility staff within 5 days from the time the heel stick was performed. Before a diagnosis can be made, confirmatory testing needs to be done. Parents or guardians should be contacted by their newborn's primary care provider or the birthing facility/midwife who performed the screening for a follow-up.
Pass: The newborn had normal blood oxygen saturations, which indicates that their risk for CCHD is low. CCHD screening 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.
Not pass: If the newborn does not pass their CCHD screen, another screen will be performed after one hour. If the newborn does not pass the rescreen, an echocardiogram should be performed as soon as possible (ideally before leaving the hospital) to rule out a CCHD.
Pass: The newborn did not show signs of hearing loss. No further hearing screening is needed during the newborn period. Hearing screens will still need to be done periodically throughout childhood to ensure hearing loss has not developed later on.
Not pass: The newborn may have hearing loss. Confirmatory testing will be needed to verify that hearing loss is present. The birthing facility staff should refer parents or guardians to an audiology specialist to have the confirmatory testing done. Visit the Early Hearing Detection and Intervention Program page for additional information.
- Requesting Newborn Screening Results
Newborn screening results should be available to you through your healthcare provider. If your provider does not have the newborn screening results:
- You may opt to be tested through a simple blood test. This process is significantly faster than requesting your newborn screening results.
- Your provider can submit a request to the newborn screening lab. Requests can take up to 30 business days to complete.
- If your provider will not submit the request on your behalf, you can request your newborn screening results; however, this process takes substantially longer (up to 60 business days to complete).
*If you are 18 years or older, complete State Form 55649 and provide a photocopy of a valid ID.
*If you are younger than 18 years, your parent or guardian must complete State Form 55649 and submit a photocopy of their ID.
Completed forms and ID photocopies can be mailed or emailed to the health department as provided on State Form 55649.
The newborn screening program cannot expedite the results request process for any reason. Please plan accordingly if results are needed by a certain date.