[Congressional Record Volume 163, Number 61 (Friday, April 7, 2017)]
[Senate]
[Pages S2459-S2460]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SENATE RESOLUTION 128--DESIGNATING APRIL 2017 AS ``NATIONAL CONGENITAL
DIAPHRAGMATIC HERNIA AWARENESS MONTH''
Mr. CARDIN (for himself and Mr. Strange) submitted the following
resolution; which was referred to the Committee on the Judiciary:
S. Res. 128
Whereas congenital diaphragmatic hernia (referred to in
this preamble as ``CDH'') occurs in individuals in which the
diaphragm fails to fully form, allowing abdominal organs to
migrate into the chest cavity and preventing lung growth;
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''), 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 2,500
live births worldwide;
Whereas in the United States, CDH affects approximately
1,600 babies each year;
Whereas since 2000, 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
that totals not less than $100,000; and
Whereas Federal support for CDH research at the National
Institutes of Health for 2017 is estimated to be not more
than $4,000,000: Now, therefore, be it
Resolved, That the Senate--
(1) designates April 2017 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
resolving clause as ``CDH'');
(B) inform all Americans about the dangers of CDH,
especially groups of people 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.
Mr. CARDIN. Mr. President, I rise today to ask my Senate colleagues
to join me in designating April 2017 as National Congenital
Diaphragmatic Hernia Awareness Month. Congenital Diaphragmatic Hernia,
also known as CDH, is a birth defect that occurs when the fetal
diaphragm fails to fully develop, allowing abdominal organs to move
into the chest cavity and preventing lung growth. When the lungs do not
develop properly during pregnancy, it can be difficult for the baby to
breathe after birth or the baby is unable to take in enough oxygen to
stay healthy. Congenital diaphragmatic hernia is a birth defect that
occurs in 1 out of every 2,500 live births worldwide. Only about 50
percent of CDH cases are diagnosed in utero. The Center for Disease
Control & Prevention, CDC, estimates that CDH affects 1,600 babies in
the United States each year. Every 10 minutes, a baby is born with CDH,
adding up to more than 700,000 babies with CDH since 2000. According to
the CDC, babies born with CDH experience a high mortality rate ranging
from 20 to 60 percent depending on the severity of the defect and the
treatments available at delivery, yet most people have never heard of
CDH.
Researchers are making great progress to determine the cause of this
birth defect and to identify optimal treatment methods. In fiscal year
2017, the National Institutes of Health funded approximately $4 million
in CDH research, an increase of $700,000 from fiscal year 2015. There
is still much progress to be made, however. The cause of CDH remains
unknown, and there currently is no cure. CDH survivors often endure
long-term complications such as congenital heart defects and
developmental delays and the average CDH survivor will face postnatal
care of more than $100,000.
Last month, members from the Association of Congenital Diaphragmatic
Hernia Research, Awareness and Support, also known as CHERUBS, visited
my office. Among them were David and Allison Finger and their daughter
Vivienne from Hyattsville, MD. Vivienne was born with CDH and had to
spend 60 days in the newborn intensive care unit after birth and had to
have surgery to repair the hernia when she was only 3 weeks old. On
March 18, 2017, Vivienne celebrated her second birthday and is doing
very well. Babies like Vivienne, born with CDH, today have a better
chance of survival due to early detection and research on treatment
options.
For these reasons, I am proud my colleague the junior Senator from
Alabama, Senator Strange, has joined me in introducing a bill
designating April 2017 as National Congenital Diaphragmatic Hernia
Awareness Month. In previous years, I was pleased to work with his
predecessor; Senator Sessions, on this legislation. Designating this
month in this fashion provides an opportunity to raise public awareness
about CDH; promote quality prenatal care and ultrasounds to detect CDH
in utero; and support funding for the research necessary to improve
screening and treatment of CDH, discover the causes of CDH, and develop
a cure for CDH.
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