[Congressional Record (Bound Edition), Volume 163 (2017), Part 4]
[Senate]
[Pages 5788-5789]
[From the U.S. 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;

[[Page 5789]]

       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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