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— (1) designates April 2014 as National Congenital Diaphragmatic Hernia Awareness Month ; (2) declares that steps should be taken to— (A) raise awareness of and increase public knowledge about congenital diaphragmatic hernia (referred to in this resolution as CDH ); (B) inform minority populations about CDH; (C) disseminate information on the importance of quality neonatal care of CDH patients; (D) promote quality prenatal care and ultrasounds to detect CDH in utero; and (E) increase research funding in an amount commensurate with the burden of CDH to— (i) improve screening and treatment for CDH; (ii) discover the causes of CDH; and (iii) develop a cure for CDH; and (3) calls on the people of the United States, interest groups, and affected persons to— (A) promote awareness of CDH; (B) take an active role in the fight against this devastating birth defect; and (C) observe National Congenital Diaphragmatic Hernia Awareness Month with appropriate ceremonies and activities.