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Office of Newborn Screening
Healthcare Providers – Talking to Parents
The documents below outline key newborn screening concepts you may find useful when talking with parents:
- Dispelling Myths: What Newborn Screening Is and What It Isn't
- Newborn Screening Essentials for Providers
In addition, the following talking points provide a suggested framework for discussion with families.
- All babies are at risk, but why can't I tell if my baby has a disorder without screening?
- Why are disorders so serious and sometimes life-threatening?
- How does newborn screening work?
- Why does testing need to be within 24-36 hours of being born?
- Who will be contacted with screening results?
- Where can parents get more information about newborn screening?
All babies are at risk, but why can't I tell if my baby has a disorder without screening?
Newborn screening is important for all babies because even without a family history of any of the screened disorders, every baby is at risk. Most babies with a disorder are born into a family with no other affected family members. Most affected babies look healthy at birth.
Why are disorders so serious and sometimes life-threatening?
The screened disorders are serious and can cause severe disability or even death if not detected and treated early. For some disorders, symptoms appear quickly and for others the baby appears fine for a while before symptoms appear and by that time permanent damage has been done.
Newborn screening is not just a PKU test anymore but includes hearing screening and a panel of 28 disorders detected by bloodspot testing.
How does newborn screening work?
A few large drops of blood are obtained by pricking the baby's heel. These blood drops are collected on a special filter paper kit, dried, and sent to the State Lab for analysis.
Hearing screening is done when the baby is quiet or asleep by a trained screener using equipment that provides an automated pass or refer result sound is introduced into the baby's ear and either an otoacoustic emission is measured or an auditory brainstem response is measured from scalp electrodes. This testing is painless and takes only a few minutes to complete.
Why does testing need to be within 24-36 hours of being born?
The first bloodspot test should be done between 24 and 36 hours of age or prior to discharge from the hospital. For some disorders, false negative results can occur with later testing. The second screen should be done at the first outpatient visit to a healthcare provider or between 5 and 10 days of age, whichever comes first.
The hearing test will be done before the baby is discharged from the hospital. Any rescreening should be done within two weeks and diagnostic testing should be done as soon as possible following a failed outpatient screen. Completing diagnostic testing before three months of age ensures that testing can be done without sedation or anesthesia and that early intervention and fitting of hearing aids, if appropriate, can take place before six months of age. Babies that are in the neonatal intensive care unit for more than five days should go directly to a diagnostic evaluation if they fail the inpatient screen.
Who will be contacted with screening results?
Parents will not be contacted by the Office of Newborn Screening if their baby's results are normal. Providers who order the screening will receive mailed results and providers can request copies of tests ordered by others when they begin care for a baby. All newborn screening results should be documented in the baby's medical record.
If results are highly abnormal, parents will get a call from their baby's doctor or from the Program with instructions for immediate diagnostic testing. For borderline results, they will usually be contacted by their doctor and will get a letter from the Program. If a specimen can't be tested (an unsatisfactory or "unsat" specimen) or if results show a hemoglobin trait, parents will receive a letter from the Program asking them to contact their baby's doctor for further information.
Screening tests are not diagnostic and abnormal results will occur for babies that do not have a disorder (false positive results). Further testing will be needed promptly. So that parents can be notified, it is important for them to submit a current address and phone number on the specimen card. It is recommended that a second contact phone number also be included on the collection card.
Results of hearing screening are recorded on the back of the baby's immunization card. If the baby does not pass, a repeat test will be scheduled at the hospital where the baby was born. The Program does not start follow-up until the baby is a month of age and has not yet passed a hearing test.
Where can parents get more information about newborn screening?
Hospitals and other health care professionals should give a copy of the Newborn Screening – A Guide for Parents brochure to parents before the first newborn screening test is ordered. Hearing screeners should also have a supply of the Can My Baby Hear – Your Baby's First Hearing Test to share with parents at the time of their baby's hearing test.
Parents are encouraged to visit our Information for Parents page for additional program resources and links to many other sites with newborn screening information.