Capitol Hill can get noisy this time of year.  So many advocates, causes, meetings, rallies, constituents – all vying with one another for the attention of our elected officials.  But among these is a “quiet” group; in fact, a voiceless one.  And yet, they desperately need Congress’ attention.  These are the premature infants, who face grave and far-reaching health challenges, which create disproportionate healthcare costs and result in difficulty accessing the treatment they need. 

These infants require Congress’ attention.  One in nine babies is born premature, defined as before 37 weeks gestation.  But prematurity maintains a relatively low profile.  Their parents are often young and uneducated and unable or unwilling to challenge the system. Further, they are taxed with unexpected challenges as well as overwhelming medical expenses. The average hospital stay for a premature infant is nine times longer than that of a full-term baby, greater than $52,000 on average.  For many parents, these costs can be not only stressful but financially devastating.

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Expenses pose a staggering burden for the nation’s health care system as well. The United States welcomes approximately 450,000 premature babies each year.  The annual nationwide cost of their stays in Neonatal Intensive Care Units totals $26 billion. Despite progress in the prevention of prematurity, we can do better.

Premature birth takes a heavy toll on America’s families.   Prematurity is the number one associated cause in infant death during the first year of life.  Preemies who do survive may have unexpected complications, such as hearing or visual impairments, cerebral palsy or mental retardation.  

The challenges continue in childhood and adulthood.  For some premature infants, respiratory syncytial virus will wreak havoc on their underdeveloped lungs and fragile immune systems.  They may have to return to the intensive care unit and be placed on assisted ventilation in order to survive. Some require heart lung bypass or ECMO.  Childhood asthma is highly associated with prematurity.  Chronic lung disease, learning difficulties, behavior and social-emotional concerns, and poor health and growth may continue to affect these babies for the rest of their lives. 

And which families face these challenges most frequently?  Those already affected by disparity.  African American mothers are more likely than white mothers to deliver premature infants. The Centers for Disease Control reports that the rate is almost twice that of white or Hispanic mothers. Socio-economic disparities and the mothers’ inability to access quality prenatal care can further complicate these infants’ prognosis.

Congress must shape policy that protects these infants’ by supporting access to the care, optimal nutrition and treatment advised by their health care providers.  We must take care to see that preemies, especially those burdened with multiple disparities – health challenges, socio-economic concerns, racial barriers – have an equal opportunity at getting the health care they need. In a health care environment strapped by a need to curtail costs, we cannot let premature infants fall prey to budget-conscious policies that restrict their access to the medications and care they desperately need.  We cannot balance the budget on the backs of our most fragile premature infants. These policies that limit lifesaving preventative measures can contribute to poor outcomes and perpetuate the cycle.

This is our rallying cry. On behalf of health care providers, parents and advocates of fragile preemies united, I urge Congress to listen.

Goldstein is a neonatologist in Loma Linda, CA and chairman of the National Coalition for Infant Health.