NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS MONTH
(Senate - April 19, 2016)

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[Congressional Record Volume 162, Number 60 (Tuesday, April 19, 2016)]
[Page S2195]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




        NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS MONTH

  Mr. SESSIONS. Mr. President, today I wish to discuss S. Res. 408. I 
am delighted that the Senate has unanimously declared April as National 
Congenital Diaphragmatic Hernia Awareness Month for the fourth 
consecutive year. I would like to thank my friend and able colleague, 
Senator Ben Cardin of Maryland, for joining me in this legislation. 
This resolution is very important to me and my family as my grandson 
Jim Beau is a CDH survivor.
  I specifically wanted to speak today, April 19, to commemorate 
Congenital Diaphragmatic Hernia Action Day. Charities and families in 
60 countries and cities all over the U.S. are working together to raise 
CDH Awareness through State and town proclamations, lighted buildings, 
Parades of Cherubs, fundraisers, and other events.
  CDH is a birth defect that occurs when the fetal diaphragm fails to 
fully develop. The lungs develop at the same time as the diaphragm and 
the digestive system. When a diaphragmatic hernia occurs, the abdominal 
organs move into and develop in the chest instead of remaining in the 
abdomen. With the heart, lungs, and abdominal organs all taking up 
space in the chest, the lungs do not have space to develop properly. 
This may cause the lungs to be small and underdeveloped.
  A diaphragmatic hernia is a life-threatening condition. 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.
  Several members from the CHERUBS group visited my office yesterday. I 
was encouraged by their good spirit and enthusiasm. These individuals 
have been coming to Capitol Hill every year for the last several years 
to advocate for Federal assistance for this birth defect. Over the last 
4 years, we have made good progress.
  We have seen an increase in funding at the National Institutes of 
Health, NIH. In fiscal year 2015, the NIH funded approximately 
$3,300,000 in CDH research. This is an increase of $800,000 from fiscal 
year 2014. We have also seen an increase in awareness and education. 
But more research is needed. The cause of CDH remains unknown. Most 
cases of diaphragmatic hernia are believed to be multifactorial in 
origin, meaning both genetic and environmental factors are involved. It 
is thought that multiple genes from both parents, as well as a number 
of environmental factors that scientists do not yet fully understand, 
contribute to the development of a diaphragmatic hernia.
  Congenital diaphragmatic hernia is a birth defect that occurs in 1 
out of every 3,836 live births worldwide.
  The CDC estimates that CDH affects 1,088 babies in the U.S. each 
year.
  Every 10 minutes, a baby is born with CDH, adding up to more than 
700,000 babies with CDH since just 2000; yet most people have never 
heard of CDH.
  Up to 20 percent of cases of CDH have a genetic cause due to a 
chromosome defect or genetic syndrome.
  According to the CDC, babies born with CDH experience a high 
mortality rate ranging from 20-60 percent depending on the severity of 
the defect and the treatments available at delivery. The mortality rate 
has remained stable since 1999.
  Approximately 40 percent of babies born with CDH will have other 
birth defects, in addition to CDH. The most common is a congenital 
heart defect.
  Awareness, good prenatal care, early diagnosis, and skilled treatment 
are the keys to a greater survival rate in these babies. That is why 
this resolution is so important.
  In 2009, my grandson Jim Beau was diagnosed with CDH during my 
daughter Mary Abigail's 34th week of pregnancy. At that time, no one in 
my family had heard of CDH before. My family was very lucky that Jim 
Beau's defect was caught before he was born and that he was in the 
right place to receive excellent care for his CDH.
  He is now a happy, rambunctious 6-year-old.
  The resolution Senator Cardin and I introduced is important because 
it will bring awareness to this birth defect, and this awareness will 
save lives. Although hundreds of thousands of babies have been 
diagnosed with this defect, the causes are still unknown, and more 
research is needed. Every year more is learned and there are more 
successes. We are making good progress, and we must continue these 
efforts.
  I want to thank my colleagues for joining me in supporting this 
legislation to bring awareness to CDH.
  I thank the Chair.

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