Magazine article The Exceptional Parent

2018 Newborn Screening Resources

Magazine article The Exceptional Parent

2018 Newborn Screening Resources

Article excerpt

For over 50 years, newborn screening has allowed for timely detection, diagnosis, intervention, and management of rare medical conditions. Newborn screening is regarded as one of the most successful public health initiatives of the past century, with tremendous reach and impact on the healthy development of children across the country beginning in the first few days after birth.

Although the newborn screen itself is just one point in time--more specifically, 24 to 48 hours after birth--its influence on that child's future health and wellbeing is long-lasting. The majority of the nearly 4 million babies screened annually in the United States are found to be healthy, with no conditions detectable by existing screening tests. However, for 1 in 300 babies, newborn screening carries life-changing potential. The overwhelming majority of babies flagged on newborn screens, and later diagnosed, go on to live normal, healthy lives and meet expected developmental milestones.

Some newborn screening conditions have well-understood natural histories and treatment protocols, while other conditions are relatively new to the public health and healthcare systems in a population screening context. In either case, monitoring and management of special medical needs extends beyond infancy for many children affected by newborn screening disorders. Depending on the condition, healthcare professionals may prescribe children special diets and medication, refer them to medical subspecialists and early intervention services, and/or conduct periodic testing according to established standards of care.

If you are a newcomer to the newborn screening community and unsure where to start, Baby's First Test (www.BabysFirstTest.org) is a great entry point. Baby's First Test, which houses the nation's newborn screening clearinghouse, promotes awareness, knowledge, and understanding of newborn screening at the local, state, and national levels. Baby's First Test is dedicated to providing support and education through the newborn screening experience for parents, family members, health professionals, and the general public. Contact: info@babysfirsttest.org

TIPS FOR IDENTIFYING QUALITY RESOURCES

* Note if the resource you're looking at has a publication date or date of last update. This can clue you in to the currency and accuracy of the information.

* The source of the information can give an indication of how trustworthy or legitimate the resource is. If the creator or publisher of the resource is a federal or state agency, government-funded program, or academic/research institution, it is likely to be a higher-quality resource.

* Ask yourself as you read: is the writing grammatically sound and easy to understand? Do the main informational points fit together and make sense as a whole?

* Pay attention to the tone and stance of the resource. Is the author making claims based on opinion and speculation, or on evidence and reason? Are there scientific sources referenced either in the resource or in a "Works Cited" section? Opinion and bias don't necessarily compromise a resource's quality, but it's wise to consider what perspective or angle the author is taking in presenting the information.

* Bottom line: the quality of a resource depends on the type of information you're looking for and what need it will fulfill. If you're seeking a family story about what day-to-day life is like with a newborn screening condition, the criteria for "quality" will differ from a resource on a state's newborn screening follow-up process. The most important thing to consider is: where is the author pulling their information from?

For 1 in 300 babies, newborn screening carries life-changing potential. The overwhelming majority of babies flagged on newborn screens, and later diagnosed, go on to live normal, healthy lives and meet expected developmental milestones.

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