U.S. Senate Unanimously Passes Resolution to Make April, 2014 “National Congenital Diaphragmatic Hernia Awareness Month”

S.Res. 414: A resolution designating April 2014 as “National Congenital Diaphragmatic Hernia Awareness Month”.

Introduced:  Apr 07, 2014 (113th Congress, 2013–2015)
Status:  Agreed To (Simple Resolution)
https://www.govtrack.us/congress/bills/113/sres414
Sponsored by Sen. Jeff Sessions (R-AL) and Sen. Ben Cardin (D-MD).

113th CONGRESS

2d Session

S. RES. 414

IN THE SENATE OF THE UNITED STATES

April 7, 2014

(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.

 
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