Designating April 2016 as National Congenital Diaphragmatic Hernia Awareness Month.

Designating April 2016 as National Congenital Diaphragmatic Hernia Awareness Month Whereas congenital diaphragmatic hernia (referred to in this preamble as CDH Whereas the Director of 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 reflux, 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 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 3,836 live births worldwide; Whereas in the United States, CDH affects approximately 1,088 babies each year; Whereas since 2000, CDH has affected more than 700,000 babies worldwide; 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 that totals not less than $100,000; and Whereas Federal support for CDH research at the National Institutes of Health for 2015 is estimated to be not more than $3,300,000: Now, therefore, be it That the Senate (1) designates April 2016 as National Congenital Diaphragmatic Hernia Awareness Month (2) encourages that steps should be taken (A) to raise awareness of and increase public knowledge about congenital diaphragmatic hernia (referred to in this resolving clause as CDH (B) to inform all people of the United States about the dangers of CDH, especially groups of people that may be disproportionately affected by CDH or have lower survival rates; (C) to disseminate information on the importance of quality neonatal care of CDH patients; (D) to promote quality prenatal care and ultrasounds to detect CDH in utero; and (E) to support research funding of CDH (i) to improve screening and treatment for CDH; (ii) to discover the causes of CDH; and (iii) to develop a cure for CDH; and (3) calls on the people of the United States, interest groups, and affected persons (A) to promote awareness of CDH; (B) to take an active role in the fight against this devastating birth defect; and (C) to observe National Congenital Diaphragmatic Hernia Awareness Month with appropriate ceremonies and activities.

Summary: Designates April 2016 as National Congenital Diaphragmatic Hernia Awareness Month. (Congenital diaphragmatic hernia is a birth defect that occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and preventing lung growth.) Encourages that steps should be taken to: raise awareness of and increase public knowledge about congenital diaphragmatic hernia (CDH); inform all Americans about the dangers of CDH; disseminate information on the importance of quality neonatal care for CDH patients; promote quality prenatal care and the use of ultrasounds to detect CDH in utero; and support research funding of CDH to improve screening and treatment, discover its causes, and develop a cure.