Dear Mr. Sparks,
A wonderful thing happened on Capitol Hill today!
WASHINGTON—U.S. Senator Jeff Sessions (R-AL) issued the
following statement today after the Senate unanimously passed his
resolution designating April 2015 as National Congenital Diaphragmatic
Hernia Awareness Month. Sessions’ grandson, Jim Beau, was born with CDH:
“Congenital Diaphragmatic Hernia is a dangerous birth defect that
affects 1 out of every 2,500 babies born each year, yet most people have
never heard of it. It is as common as cystic fibrosis and can be
deadly.
CDH occurs when a child’s diaphragm does not fully develop, which
allows abdominal organs into the chest cavity, preventing healthy lung
growth. Complex surgeries can be required, and survivors sometimes face
long hospital stays or dependence on ventilation machines.
There is no known cause of CDH, but early detection and good prenatal
care can catch the defect early. And, constantly improving medical
treatments—together with increased public awareness and research towards
a cure—can help children born with CDH live healthy lives unencumbered
by their birth defect. I’m glad the Senate has again declared a full
month for CDH awareness, and I thank Sen. Cardin for joining with me in
this important effort. The resolution builds on the life-saving work
done every day by CHERUBS, the Association of Congenital Diaphragmatic
Hernia Research, Awareness and Support.”
Text of A resolution designating April 2015 as “National Congenital Diaphragmatic Hernia Awareness Month”.
This simple resolution was agreed to on
March 25, 2015. That is the end of the legislative process for a simple
resolution. The text of the bill below is as of Mar 25, 2015 (Resolution Agreed to).
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 2014 is estimated to be not more than $2,500,000: Now, therefore, be
it
That the Senate—
(1) designates April 2015 as National Congenital Diaphragmatic Hernia Awareness Month
;(2) encourages 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
all Americans about the dangers of CDH, especially those groups that
may be disproportionately affected by CDH or have lower survival rates;
(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) support research funding 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.
The statistics written in this Resolution were written by our charity. Never in a million years did that 22 year old mom who started CHERUBS ever think my words would show up in a United States Senate Resolution. This is the forth year that Sen. Sessions has sponsored a Resolution for us and every year, it still brings me to tears that our children have a voice on Capitol Hill.
God bless Sen. Sessions for all he does for our children.
Sincerely,
Dawn Torrence Williamson
Very Proud CHERUBS President
