3 Questions to Ask About Newborn Screening Posted on August 1, 2023 Debra Ellis, NBS, RN, Program Manager, Newborn Screening Every year, about 4 million babies are born in the U.S. Most, if not all, of these babies have had newborn screening, and since they began 50 years ago, newborn screening has been helping babies each year. This means that about 200 million people went through newborn screening when they were born, yet there is still an overall lack of awareness of how crucial it is. Newborn screening is an important program that the CDC declared as one of the ten greatest public health achievements of the 21st century. This September is Newborn Screening Awareness Month, a time for medical professionals to focus on this program and a time for parents to ask questions. Here are the answers to common questions concerning Newborn Screening… Want more articles like this from pediatric experts you trust? Sign up for our newsletter. Subscribe 1. What is newborn screening? Newborn screening refers to a series of tests that identifies rare conditions in newborns. Screening prevents those conditions from doing permanent damage before symptoms even appear. In Connecticut, babies are screened for over 60 conditions. The specific screenings vary by state, but this overview from Baby’s First Test further explains the most common tests. At around 30 hours of life, a nurse will perform a heel stick and collect a few spots of blood to screen for a panel of disorders. If a newborn’s screen is flagged as “out of range” for any of the disorders, doctors will then order more testing to be sure of the child’s condition. Though it’s not guaranteed that the baby has one of these disorders, newborn screening steers doctors in the right direction should they need additional testing. 2. Why is newborn screening mandatory in the US? Newborns born with these harmful conditions may look healthy at birth. While most of the conditions screened for are easily treatable with a change in diet or even a medication, without a screening, these conditions may go undetected and result in serious health consequences. Newborn screening is considered a standard part of newborn care. Unless parents decline, all newborns receive newborn screening. If a condition remains undiagnosed, it can continue to cause permanent damage to the baby. This is why newborn screening is so important, to identify and treat affected newborns before they suffer significant and potentially fatal health problems. 3. Why is newborn screening awareness important? Newborn screening is invisible until it is needed. Most people have no idea that their child has been screened or what the results are. It’s shocking how critical newborn screening is, that every baby receives it, and that so few parents and providers discuss it. However, studies show that if parents are educated about newborn screening, they have a better reaction to results that are out of range, making them less concerned throughout the diagnostic workup. That’s why, every September, the healthcare community recognizes Newborn Screening Awareness Month. Bottom line? If you’re expecting, keep an open dialogue with your care team about what you can expect after birth. Always ask for any and all information about newborn screening. It’s important to “normalize” these conversations and spread awareness. Newborn screening in Connecticut The Connecticut Newborn Screening Network is part of the state of Connecticut’s newborn screening system. Based at Connecticut Children’s Medical Center, the Network hopes to increase awareness of newborn screening and its impact on child development. Its goal is to provide education and support to families and healthcare teams with resources, materials, informational sessions, advocacy groups, and more. Overall, newborn screening is a vital step in preventing disabilities for the 4 million babies born each year. With an early diagnosis, many infants can grow into healthy adults, and with the proper information and awareness, parents and clinicians can help them with this growth.