Statements on Introduced Bills and Joint Resolutions

Floor Speech

BREAK IN TRANSCRIPT

Mr. SESSIONS. Mr. President, I rise today to introduce legislation, along with my friend and able colleague, Senator Ben Cardin of Maryland, that would create a national campaign at the Department of Health and Human Services to bring attention to congenital diaphragmatic hernia.

What is CDH? It is a birth defect that occurs when the fetal diaphragm fails to fully develop, allowing abdominal organs to migrate up into the chest.

This invasion of organs--including the bowel, stomach, spleen, and liver--may severely limit the growth of a baby's lungs.

Regrettably, some have recommended terminating the pregnancy when a woman learns that her unborn child has CDH.

This is an important issue, and makes promoting awareness of this birth defect and the positive outcomes of good treatment especially important.

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

The lungs of a baby with CDH are often too small, biochemically immature, structurally immature, and the flow in the blood vessels may be constricted, resulting in pulmonary hypertension.

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 babies 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. However, hospitalization often ranges from 3 to 10 weeks, 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.

Congenital diaphragmatic hernia is a birth defect that occurs in 1 out of every 2,500 babies. 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.

In my opinion, awareness and early diagnosis and skilled treatment are the keys to a greater survival rate in these babies. Fifty percent of the babies born with CDH do not to survive.

In 2009, my grandson, Jim Beau, now 2 1/2 years old, 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 and her Navy officer 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, FL, for a fetal echo. The technician there told her 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, Mary Abigail had not, and at that time our family did not know of this problem or the extent of our grandson's birth defect.

The Navy temporarily allowed my daughter and her family to move 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. As it turned out, the hole in his diaphragm was large, and his intestines, spleen, and one kidney had moved up into his chest cavity. 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. In total, he was in the NICU--the neonatal intensive care unit--for 43 days before he was able to go home, all under the constant watch of his angel mother. I could not have been prouder of her. She and Paul were wonderful during this time.

This country has superb health care--the world's best. Without even our knowledge, this young Navy family had their unborn child diagnosed and sent to a university hospital three hours away the University of Florida's Shands Hospital.

Fortunately for my family, and for thousands of other similar families across the United States, there are a number of physicians doing incredible work to combat CDH. By chance, the University of Florida's Shands Children's Hospital is surely one of the world's best--maybe the best. The CDH survival rate at Shands in Gainesville is unprecedented. The survival rate of CDH babies born at Shands is being reported at 80 to 90 percent, while the nationwide average is 50 percent.

Dr. David Kays, who directs the CDH program and who was the physician for my grandson's surgery, is a magnificent surgeon and physician. He uses gentle ventilation therapy as opposed to hyperventilation. Gentle ventilation therapy, he has discovered over the years, is less aggressive and therefore protects the underdeveloped lungs. Jim Beau, I have to say, is a wonderful little boy, full of energy and enthusiasm. He is active and happy--one of the most happy young children I have ever seen--and so quick to smile.

This weekend, he attended his big sister Jane Ritchie's 5 year birthday party and he was totally happy and running around, climbing over all the playground equipment, with the older children just as though he was one of them. He thought he was in high cotton to be playing with these big boys and girls.

While the challenges are many, so are the successes with this condition. Every year more is learned and there are more successes. My family has been very lucky that Jim Beau's defect was caught before he was born and that he was able to go to the right place--a first-rate place--to seek excellent care for his CDH.

The bill Senator Cardin and I are introducing today is important because a national campaign for CDH will help bring awareness to this birth defect and save lives, I am convinced of it. Although hundreds of thousands of babies have been diagnosed with this defect, the causes are unknown and more research is needed. The thousands of happy, growing children who have overcome this condition validates what has been accomplished to date and encourages us to do even more.

I hope my colleagues will join me and my friend and colleague Senator Cardin in supporting this bill to bring awareness of CDH to the world. I think it will create many more happy and healthy young people in the years to come.

BREAK IN TRANSCRIPT

Source