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Safe Communities, Safe Schools Act of 2013

Floor Speech

Location: Washington, DC


Mr. SESSIONS. Mr. President, I rise today to discuss S. Res. 85. I am pleased that the Senate has unanimously declared April as National Congenital Diaphragmatic Hernia Awareness Month. 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.

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.

CDH will normally be diagnosed by prenatal ultrasound, as early as the 16th week of pregnancy. If undiagnosed before birth, the baby may be born in a facility that is not equipped to treat its compromised system because many CDH babies will need to be placed on a heart-lung bypass machine, which is not available in many hospitals. All babies born with CDH will need to be cared for in a Neonatal Intensive Care Unit, NICU.

Babies born with CDH will have difficulty breathing as their lungs are often too small, biochemically and structurally immature. As a result, the babies are intubated as soon as they are born, and parents are often unable to hold their babies for weeks or even months at a time.

Most diaphragmatic hernias are repaired with surgery 1 to 5 days after birth, usually with a GORE-TEX patch. The abdominal organs that have migrated into the chest are put back where they are supposed to be and the hole in the diaphragm is closed, hopefully allowing the affected lungs to expand. Hospitalization often ranges from 3 to 10 weeks following the procedure, depending on the severity of the condition.

Survivors often have difficulty feeding, some require a second surgery to control reflux, others require a feeding tube, and a few will reherniate and require additional repair.

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.

Congenital diaphragmatic hernia is a birth defect that occurs in 1 out of every 2,500 live births. Every 10 minutes a baby is born with CDH, adding up to more than 600,000 babies with CDH since just 2000. CDH is a severe, sometimes fatal defect that occurs as often as cystic fibrosis and spina bifida. Yet, most people have never heard of CDH.

The cause of CDH is unknown. Most cases of diaphragmatic hernia are believed to be multi-factorial in origin, meaning both genetic and environmental 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.

Up to 20 percent of cases of CDH have a genetic cause due to a chromosome defect or genetic syndrome.

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.

In 2009, my grandson Jim Beau was diagnosed with CDH during my daughter Mary Abigail's 34th week of pregnancy. Although she had both a 20-week and a 30-week ultrasound, the nurses and doctors did not catch the disease on the baby's heartbeat monitor.

Thankfully, when Mary Abigail, her husband Paul, and daughter Jane Ritchie moved to southeast Georgia, the baby's irregular heartbeat was heard at her first appointment with her new OB. She was sent to Jacksonville for a fetal echo.

The technician there told her that she wasn't going to do the echo because there was something else wrong with the baby. She asked my daughter if she had ever heard of congenital diaphragmatic hernia. Of course, she had not, and at that time our family did not know the extent of our grandson's birth defect.

My daughter and her family moved to Gainesville, FL, on November 16 and Jim Beau was born 2 weeks later on November 30. They heard their son cry out twice after he was born, right before they intubated him, but they were not allowed to hold him.

The doctors let his little lungs get strong before they did the surgery to correct the hernia when he was 4 days old. Unfortunately, it turned out that the hernia was worse than they expected. The hole in his diaphragm was very large, and he had almost no posterior diaphragm. His intestines, spleen, and one kidney were up in his chest.

Thankfully, Jim Beau did not have to go on a heart-lung bypass machine, but he was on a ventilator for 12 days and on oxygen for 36 days. In total, he was in the NICU for 43 days before he was able to go home.

Fortunately for my family, and thousands of similar families across the United States, a number of physicians are doing incredible work to combat CDH.

The CDH survival rate at Shands Children's Hospital in Gainesville, FL, where my grandson was treated, is unprecedented. The survival rate of CDH babies born at Shands is between 80 percent and 90 percent, while the nationwide average is significantly lower.

Dr. David Kays, who was the physician for my grandson's surgeries, uses gentle ventilation therapy as opposed to hyperventilation. Gentle ventilation therapy is less aggressive and therefore protects the underdeveloped lungs. My family was very lucky that Jim Beau's defect was caught before he was born, and that they were in the right place to seek excellent care for his CDH.

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 unknown and more research is needed. Every year more is learned and there are more successes. I hope my colleagues will join me in supporting this legislation to bring awareness to CDH.

Tomorrow, April 19, is the International Day of Congenital Diaphragmatic Hernia Awareness. In commemoration of this day, a march, the Parade of Cherubs, will take place tomorrow here in Washington, DC. We will be joined in our efforts by multiple cities across the Nation, all of which are hosting their own Parade of Cherubs. Events like these will help increase awareness of this devastating birth defect.

I thank the Chair and yield the floor.


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