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For many years I have been seeing families who have undergone newborn screening well within the one-, three-, and six-month guidelines recommended by EHDI. Parents will tell you that they appreciate learning so early, but when they have a chance to reflect, they mourn the fact that they did not have a chance to enjoy their baby. The superficial questionnaires we have been using for research do not get at the devastating effect newborn screening has on many families. If given a choice, parents would opt for identification at about 3 months of age. We would then have an intact family who could follow through on our recommendations and almost no false-positives that currently bedevil us. Despite good practice, the false-positive rate in Massachusetts is still 75% and reflects the transitory, conductive losses that spontaneously clear up by 3 months. Our current system of screening is institution-driven and is not family-centered. We need to have a model that truly puts families first. Screening within 48 hours of birth is not within the best interests of the child or the parents. It is not sufficient for us to say that there are difficulties in testing later without examining current practice in depth, and I challenge us as a profession to create a more humane and family-centered model.
David Luterman
Amesbury, Massachusetts
dmluterman@aol.com
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