Doctors and Families Rally for Cure for Deadly Birth Defect
Infants Deaths Trigger Funding for Rare Disease
Money raised will go toward understanding, and curing Congenital Diaphragmatic Hernia
March 31, 2009 – ST. LOUIS – On December 6, 2008, Cadan Christopher’s mom and dad held him for the first - and last - time. He was twelve days old.
The chest tubes, pumps and breathing machines attached to Cadan’s tiny body proved too weak to overcome his daunting diagnosis - 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 after an exhausting, 12-day battle.
“We wanted Cadan to go to a more peaceful place without tubes and needles and machines all around him,” says Cadan’s mom, Tiffany Frericks.
In Cadan’s memory, the Frericks have joined with another family who suffered the loss of their infant to CDH, in raising money for the Breath of Hope foundation, which collects and distributes money for ongoing research into the treatment and cure of CDH.
Ryann Hope died in the St. Louis Children’s Hospital Newborn Intensive Care Unit (NICU) when she was just nine days old. Her parents have been selling T-shirts to raise awareness and fund research into this little-known disease.
“Our goal is to make this birth defect known,” says Jaime Smith, Ryann’s mom. “We want to raise as much awareness as possible so someday, somebody can figure out why it happens, and what we can do to stop it because so many babies are dying.”
The money will be directed toward the research of Dr. Brad Warner, surgeon-in-chief at St. Louis Children’s Hospital and the Apolline Blair Professor of Surgery at Washington University School of Medicine. Dr. Warner is conducting research into pulmonary hypertension as a consequence of CDH. Pulmonary hypertension is one of the primary complications Cadan suffered before he died.
Tuesday, March 31st, the Breath of Hope foundation joined families who lost babies to CDH, as well as NICU parents and hospital staff, for a support rally at St. Louis Children’s Hospital.
Governors from thirty states, including Missouri and Illinois, recognized March 31st as Congenital Diaphragmatic Hernia Awareness Day.
“Caring for these two babies was a very memorable experience for me because I feel we offered everything possible for them and it just didn't work,” says Dr. Warner.
“It was devastating because I feel there is much room to improve the survival rates for CDH.
“We are researching our clinical outcomes, participating in a national database registry, and seeking to recruit new faculty members with expertise and research interest in this area.”
“Someday we will have better treatment, so that more babies will survive and go home and have a better quality of life,” says Frericks.
Watch the CDH Press Conference:
Part IPart II