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Helping Families Every Step of the Way

  • When you think of newborn screening, what comes to mind? Well, I realize that it just depends on what perspective you look at it from. I am both a parent of child that had an inconclusive diagnosis from the newborn screen, which later was determined positive, and a neonatal critical care nurse that must obtain the newborn screen according to the state policies of Delaware.

    There is soooo much involved with this topic. This is why Baby’s First Test is an essential resource for parents, healthcare providers, and state officials. We are the advocates for the children. We have the power to change the laws. Baby’s First Test offers a vast amount of necessary information applicable to different perspectives. The information is provided on an easy to read level and covers the newborn screening information from different angles, such as the differences in screening from state to state, to providing advice and support for families.

    I feel that my role in Baby’s First Test on the Consumer Task Force has enlightened my understanding for the need in educating the consumer about newborn screening. As a parent, it is reassuring that there are people in place that can explain how the test is done, what it means, and the resources available for a positive result.

     I remember when we received my son’s diagnosis of Cystic Fibrosis just like it was yesterday. Even as a nurse myself, I was numb for awhile just trying to comprehend what the diagnosis meant and how we would cope. The support that followed was tremendous! As a nurse, some parents ask why they didn’t ever hear about this test. Some parents ask what the screen looks for. Others ask who they talk to about the results. It is essential as a healthcare provider to be an educated provider. From now on, Baby’s First Test will be the site that I refer to and the site that I recommend to all of the families that I take care of in the hospital!

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