Let’s prevent parents from becoming newborn screen refusers!

In his commentary in this month’s Contemporary Pediatrics, “A Bioethicist’s Perspective: Why consent for newborn screening matters,” bioethicist and pediatrician Norman Fost, MD, advocates obtaining parents’ consent for newborn screening.

Many years ago, I was an RN Nursing Care Coordinator (supervisor) for a maternal child health unit obtaining and/or supervising nurses who performed newborn blood screens. Today, as a pediatric nurse practitioner (PNP) following-up newborn screen results, I can state emphatically that the perception by Dr Fost that I or any pediatric nurse or NP has assaulted a newborn by obtaining the newborn screen is absurd! NEWBORN SCREENING SAVES LIVES! Dr Fost fails to acknowledge the fact that when a woman enters the hospital to deliver her baby, the general consent form is signed by the mother for her baby’s routine care, screening, and implementation of evidence-based standards of care. Thus, the mother is consenting to the newborn screen.

Screening for the preventable

I truly fear a day when parents are asked to consent to every routine newborn screening. The outcomes for newborns whose parents refuse newborn screening would be disastrous. The refusal would result in denial of essential treatment for preventable and treatable disorders and diseases such as congenital hypothyroidism and congenital exposure to human immunodeficiency virus (HIV), and so many more afflictions would go undetected until the baby presents with horrific symptoms.

“Newborn screening is one of the most successful public health programs in the US.” As a new PNP, I was in a pediatric endocrine center when 7-year-old twins arrived from a country without newborn screening. One twin was a normal sized, intelligent 7-year-year old; the other was profoundly retarded with stunted growth and a diagnosis of obviously undiagnosed and untreated congenital hypothyroidism. Over the years, I have provided care for infants whose newborn screen returned HIV positive. The mothers had negative screenings in the beginning of pregnancy; contracted HIV during pregnancy; and unknowingly exposed their infants and themselves to HIV. It was a difficult task to inform the mother of her new HIV status and of her infant’s exposure. Thus, the point of this commentary is to counter Dr Fost’s perspective: It is all about COMMUNICATION OF SCREENING TEST RESULTS.

Communicating with compassion

First, a screening test is just that: a screening test. There will be false positives and false negatives. It is designed to screen for those individuals who are potentially at risk for a disorder or disease that can be treated and or prevented from developing into a devastating healthcare problem. Newborns are an at-risk population. The NP and all medical providers need to be skillful communicators, explaining the importance of follow-up testing for a positive screen without placing undue distress on the parents.

Lessons learned from the vaccine front

Have we not learned hard lessons from vaccine refusers? There are now more ways for parents to avoid having their children immunized against vaccine preventable diseases (VPD). These non-vaccinated children are allowed to enter day care and school and can expose other vulnerable children to VPDs. Every year there is an outbreak among children or college students that draws national attention to the problems created by vaccine refusers. With vaccine refusers as an analogy: How many of us will confront care of children presenting with disorders or diseases later in infancy or early childhood; diseases that, when detected early via the newborn screen, could have been treated, preventing the child from experiencing unnecessary, horrific outcomes? Thus, the question becomes: why would we ever even consider creating the opportunity for parents to become newborn screen refusers?