IV 113th CONGRESS 1st Session H. RES. 144 IN THE HOUSE OF REPRESENTATIVES April 9, 2013 Mrs. Roby (for herself and Mr. Holding ) submitted the following resolution; which was referred to the Committee on Energy and Commerce RESOLUTION Expressing support for designation of April 2013 as National Congenital Diaphragmatic Hernia Awareness Month .

Whereas congenital diaphragmatic hernia occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and prevent lung growth; Whereas the Centers for Disease Control and Prevention defines congenital diaphragmatic hernia as a birth defect; Whereas congenital diaphragmatic hernia occurs in 1 of every 2,500 births; Whereas congenital diaphragmatic hernia affects approximately 1,600 babies each year in the United States; Whereas the majority of congenital diaphragmatic hernia patients have underdeveloped lungs or poor pulmonary function; Whereas congenital diaphragmatic hernia patients often endure long-term complications, including pulmonary hypertension, pulmonary hypoplasia, asthma, gastrointestinal reflex, feeding disorders, and developmental delays; Whereas congenital diaphragmatic hernia survivors sometimes endure long-term mechanical ventilation dependency, skeletal malformations, supplemental oxygen dependency, enteral and parenteral nutrition, and hypoxic brain injury; Whereas congenital diaphragmatic hernia patients have a survival rate ranging from 62 percent to 90 percent depending on the severity of the defect, the treatment available at delivery, and whether extracorporeal membrane oxygenation must be used; Whereas congenital diaphragmatic hernia has affected more than 600,000 babies throughout the world since 2000; Whereas babies born with congenital diaphragmatic hernia endure extended hospital stays in intensive care with multiple surgeries; Whereas congenital diaphragmatic hernia is as common a birth defect as spina bifida and cystic fibrosis; Whereas congenital diaphragmatic hernia is diagnosed in utero in only 75 percent of cases; Whereas congenital diaphragmatic hernia is treated through mechanical ventilation, extracorporeal membrane oxygenation machines (commonly known as heart and lung bypass machines ) and surgical repair; Whereas patients often outgrow congenital diaphragmatic hernia surgical repair, leading to reherniation and requiring additional surgery; Whereas the occurrence of congenital diaphragmatic hernia does not discriminate based on race, gender, or socioeconomic status; Whereas the cause of congenital diaphragmatic hernia is unknown; Whereas the average hospital bill for a congenital diaphragmatic hernia patient is $500,000; Whereas the total annual cost of medical care for children with congenital diaphragmatic hernia in the United States is more than $800,000,000; and Whereas the month of April 2013 would be an appropriate month to designate as National Congenital Diaphragmatic Hernia Awareness Month : Now, therefore, be it

That the House of Representatives— (1) supports the designation of 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; (B) inform minority populations in the United States about congenital diaphragmatic hernia; (C) disseminate information on the importance of good neonatal care for congenital diaphragmatic hernia patients; (D) promote good prenatal care and the use of ultrasounds to detect congenital diaphragmatic hernia in utero; and (E) encourage research on congenital diaphragmatic hernia in order to discover its causes, develop treatments, and find a cure; and (3) calls on the people of the United States, interest groups, and affected persons to— (A) promote awareness of congenital diaphragmatic hernia; (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.