Cadan Christopher Frericks would have celebrated his fourth
birthday Thanksgiving weekend. But on December 6, 2008, his mom and dad held him for the first and last time. He was only twelve days old when he died of a birth defect called congenital diaphragmatic hernia (CDH).
More common than spina bifida, muscular dystrophy and cystic fibrosis, CDH remains a mysterious disease with no known cure. One in every 2,000 babies in the U. S. is born with CDH, nearly half of whom don’t live to see their first birthday.
CDH occurs when the diaphragm does not fully form and allows abdominal organs to enter the chest cavity. This can prevent the lungs from growing normally.
Cadan was placed almost immediately on a heart-lung bypass machine because his weakened lungs had developed pulmonary hypertension and could not support his body. Eventually, his organs shut down, and he passed away in his mother’s arms.
In Cadan’s memory, his parents established Cadan’s Carnival the year after his death. To date, the family has raised nearly $40,000 to support research at St. Louis Children’s Hospital.
This week the Frericks presented Dr. Brad Warner, surgeon in Chief at St. Louis Children’s Hospital, with their largest donation yet, a check for $17,000.
Dr. Warner is conducting research into the genetic causes of CDH. In partnership with Columbia University in New York, Washington University is contributing genetic information on children and immediate family members seeking to determine common genes that may be involved in causing CDH.
In addition, the Pediatric Surgery team at St. Louis Children’s Hospital is contributing to a national database through the University of Texas-Houston. Finally, by virtue of a new recruit to the division of pediatric surgery, we are spearheading an analysis of brain development using cutting-edge imaging of children with CDH who require ECMO (a form of cardiopulmonary bypass).
“Caring for Cadan was a very memorable experience for me, because I feel we offered everything possible, and it just didn’t work,” says Dr. Warner.
“It was devastating because we know there is so much room to improve the survival rates for CDH. Just in the period of time since Cadan’s death, we have seen significant improvements in survival in our own CDH babies.”
All of these efforts will help achieve the goal set by Tiffany Frericks, Cadan’s mother, “Someday we will have better treatment, so that more babies will survive and go home and have a better quality of life.”
Photo courtesy of St. Louis Children's Hospital
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