III
113th CONGRESS
2d Session
S. RES. 414
IN THE SENATE OF THE UNITED STATES
April 7, 2014
Mr. Sessions (for himself and Mr. Cardin) submitted the following resolution; which was considered and agreed to
RESOLUTION
Designating April 2014 as National Congenital Diaphragmatic Hernia Awareness Month
.
Whereas congenital diaphragmatic hernia (referred to in this preamble as CDH
) occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the
chest cavity and preventing lung growth;
Whereas the Centers for Disease Control and Prevention recognizes CDH as a birth defect;
Whereas the majority of CDH patients suffer from underdeveloped lungs or poor pulmonary function;
Whereas babies born with CDH endure extended hospital stays in intensive care with multiple surgeries;
Whereas CDH patients often endure long-term complications, such as pulmonary hypertension, pulmonary hypoplasia, asthma, gastrointestinal reflex, feeding disorders, and developmental delays;
Whereas CDH survivors sometimes endure long-term mechanical ventilation dependency, skeletal malformations, supplemental oxygen dependency, enteral and parenteral nutrition, and hypoxic brain injury;
Whereas CDH is treated through mechanical ventilation, a heart and lung bypass (commonly known as extracorporeal membrane oxygenation
), machines, and surgical repair;
Whereas surgical repair is often not a permanent solution for CDH and can lead to reherniation and require additional surgery;
Whereas CDH is diagnosed in utero in less than 50 percent of cases;
Whereas infants born with CDH have a high mortality rate, ranging from 20 to 60 percent, depending on the severity of the defect and interventions available at delivery;
Whereas CDH has a rate of occurrence of 1 in every 3,800 live births worldwide;
Whereas CDH affects approximately 1,088 babies each year in the United States;
Whereas CDH has affected more than 700,000 babies worldwide since 2000;
Whereas CDH does not discriminate based on race, gender, or socioeconomic status;
Whereas the cause of CDH is unknown;
Whereas the average CDH survivor will face postnatal care of at least $100,000; and
Whereas Federal support for CDH research at the National Institutes of Health for 2013 is estimated to be not more than $3,000,000: Now, therefore, be it
That the Senate—
designates April 2014 as National Congenital Diaphragmatic Hernia Awareness Month
;
declares that steps should be taken to—
raise awareness of and increase public knowledge about congenital diaphragmatic hernia (referred to
in this resolution as CDH
);
inform minority populations about CDH;
disseminate information on the importance of quality neonatal care of CDH patients;
promote quality prenatal care and ultrasounds to detect CDH in utero; and
increase research funding in an amount commensurate with the burden of CDH to—
improve screening and treatment for CDH;
discover the causes of CDH; and
develop a cure for CDH; and
calls on the people of the United States, interest groups, and affected persons to—
promote awareness of CDH;
take an active role in the fight against this devastating birth defect; and
observe National Congenital Diaphragmatic Hernia Awareness Month with appropriate ceremonies and activities.