Information for Parents

What You Should Know About Newborn Screening

The newborn screen is a blood test for over forty disorders including some secondary conditions and requires only five drops of blood from a baby's heel. In Alabama, it also includes screening for hearing loss and critical congenital heart disease. These tests are required by the state of Alabama, and all babies should have a newborn screen before leaving the hospital.

Newborns can still have a disorder even though they may look healthy. A baby has a greater chance for healthy growth and development if a disorder is found early. Early diagnosis may reduce morbidity, premature death, intellectual disability, and other developmental disabilities. Parents are notified, usually by their baby's doctor, if a screen is presumptive positive for a particular disorder. A presumptive positive screen does not necessarily mean that a baby is sick. Additional testing may need to be completed to confirm a disorder.

Please give the hospital your correct address, phone number, and name of the doctor who will take care of your baby to make sure you are notified of any presumptive positive results. Ask about your baby's newborn screening results at the first doctor visit. If your baby's doctor asks you to return for a repeat test please do so as soon as possible so your baby can get appropriate treatment and follow-up care if needed.

What to Expect From Your Baby's First Test

Newborn screening is one of the many things that will happen within the first few days after a baby's birth. Parents-to-be may have questions about newborn screening. The video below explains what to expect during a baby's first test, and walks parents through the heel stick, hearing and pulse ox screenings.

What If A Baby Has an Out-of-Range Newborn Screening Result?

An out-of-range newborn screening result does not necessarily mean that a baby has a condition but that further diagnostic or confirmatory testing may be needed. The Alabama Newborn Screening Follow-up Program will notify the baby's doctor right away if a result is out-of-range or presumptive positive. Below is a video that illustrates a family's journey through an out-of-range result.

How to Request Laboratory Results

You may request newborn screening laboratory results by completing the "Patient Release of Completed Laboratory Results" and faxing to the State Health Laboratory at (334) 285-6642 or emailing the form to [email protected]. Please be aware that the newborn heelstick is a screen and not intended to be diagnostic. A presumptive positive screen result typically requires further confirmatory or diagnostic testing.

Laboratory results are issued to the person on whom testing was performed, to the person who consented to have the testing performed, or if under 19, to a parent/guardian, or the person authorized by the patient to receive the results. The laboratory has up to 30 days from the time the request has been received to provide laboratory test results. This allows time for the provider to review the results and provide treatment, if required. If you have questions please call (334) 290-6130.

Sickle Cell Status for College Athletes

In 2010, the National Collegiate Athletic Association (NCAA) implemented requirements for verification of college athletes' sickle cell status.  All NCAA student-athletes must provide their school with documented results from a previous sickle cell solubility test, or they must undergo testing during their preparticipation medical examination.

All newborns in the United States undergo sickle cell testing at birth. It is recommended student athletes contact their health care provider to confirm if they have been tested for sickle cell trait through newborn screening.  In addition, they may request newborn screening laboratory results as outlined above.

Risk Factors for Late Onset Hearing Loss

The Joint Committee on Infant Hearing (JCIH) recommends that an infant with any risk factor identified for late onset hearing loss receive a diagnostic hearing evaluation by 9 months of age. Parents are encouraged to notify their child's doctor if there are any concerns regarding a child's hearing, speech, or language development.

Some common risk factors include a family history of early, progressive, or delayed onset permanent childhood hearing loss,  neonatal intensive care of more than 5 days, and infections during pregnancy. Please visit the JCIH website for further information.

Newborn Hearing - Learn American Sign Language Online

Parents who have a deaf or hard of hearing child age 36 months or younger have the opportunity to learn American Sign Language (ASL) online at no cost. To participate in Sign It! you must apply through the National Center for Hearing Assessment and Management (NCHAM).

Newborn Screening Videos

Below are links to newborn screening videos which provide an overview of the process, purpose, and importance of Newborn Screening. These videos are a great resource to answer many of the questions you may have about Newborn Screening. If you have additional questions about Newborn Screening in Alabama, please contact the Alabama Newborn Screening Program at (866) 928-6755.

• Navigate Newborn Screening- A Free Online Education Module For Families
• What is Newborn Screening?
• What to Expect From Your Baby's First Test
• A Parent's Guide to Newborn Screening
• Newborn Screening Bloodspot
• My Baby Has a Hearing Loss: A Starting Guide for Parents
• Critical Congenital Heart Disease - Pulse Oximetry Screening
• SCID Compass- An Educational Program of the Immune Deficiency Foundation

Alabama Early Intervention System (AEIS)

Early intervention is a coordinated, family-focused system of resource access, supports and services for eligible infants and toddlers, ages birth to 3 years who have developmental delays, which means that a child is not growing as expected, physically and/or mentally. Infants may be delayed in walking, talking, speaking, learning or understanding.

AEIS is a statewide system that offers eligible families the opportunity to receive appropriate services, including assistive technology, audiology, family therapy, nursing, nutrition, occupational therapy, psychological services, service coordination, special instruction, social work, speech language pathology, medical services, transportation, vision and health services, and physical therapy.

For more information about early intervention call the toll-free number at 1-800-543-3098 or to enroll for services complete the Child Find Referral Form and fax to 334-293-7393.

Family Support and Resources

• Alabama Hands & Voices
• Alabama Hearing Loss Options for Families
• Alabama Newborn Screening Timeline
• ALDConnet
• Baby's First Test: Newborn Screening
• Baby's First Test: Critical Congenital Heart Disease
• Children's Rehabilitation Service
• CureSMA
• Cystic Fibrosis Foundation
• Delivering You The Facts: Four Things You Should Know About Newborn Screening
• Family Voices
• HCU (Homocystinuria) Network America
• March of Dimes
• National PKU Alliance
• National Urea Cycle Disorders Foundation
• Newborn Screening Frequently Asked Questions
• Organic Acidemia Association
• Pathways For Families of Children Who are Deaf or Hard of Hearing
• Pregnancy Risk Assessment Monitoring System (PRAMS)
• Prenatal and Newborn Screening Pamphlet
• Save Babies Through Screening Foundation: One Foot at a Time
• SCID Compass
• Sickle Cell Disease Association of America, Inc.

Disclaimer: The information provided is purely an educational resource for parents. Please contact a medical provider for further guidance.