By KELLY WILSON
Herald-Whig Staff Writer
Tiffany Frericks is turning heartbreak into hope.
Frericks and her husband, Rome, of Quincy lost their infant son, Cadan Christopher, in December, because of complications related to a birth defect called congenital diaphragmatic hernia.
The condition is more common than spina bifida, muscular dystrophy and cystic fibrosis, affecting one in every 2,000 babies in the U.S. every year, nearly half of whom don't live to see their first birthday. However, few people have heard about CDH, and little research has been done to find more effective treatments.
Frericks is doing all she can to change that.
"Every time another (baby) dies, it tears you up all over again," she said. "You get so angry."
She and her husband learned about the condition during her pregnancy. They knew the baby would be fighting for his life, but after Cadan was born at
Barnes-Jewish Hospital in St. Louis on Nov. 24, they felt confident he would survive.
"He had a 60 percent chance of survival," she said. "I was really, really hopeful and pretty confident that we would bring him home."
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.
After Cadan's birth, he was rushed to the neonatal intensive care unit at St. Louis Children's Hospital, where he was immediately placed on a heart-lung bypass machine. His weakened lungs had developed pulmonary hypertension and could not support his body.
With the setbacks came glimmers of hope.
"I'm still thinking a miracle can happen," Frericks said.
Sadly, the family eventually was told no more could be done, and the chest tubes, pumps and breathing machines attached to his tiny body were removed.
"I was able to hold him, and Rome was able to hold him," Frericks said, unable to fight back tears.
Cadan was just 12 days old when he died in his mom's arms on Dec. 6.
Frericks knows she was blessed to have Cadan for as many days as she did, but she also knows the excruciating pain of losing a child won't go away anytime soon.
"You just think about everything. You think, 'He would have been four months old now. He would have been laughing now or smiling now,'" she said. "At times I've really been at peace with God, but other times, I get angry. I still pray a lot. If you don't have that connection with God, I don't know how you get through it."
Frericks said family and friends have helped tremendously. She joined a Bible study group at her church, and she says going to church and listening to the sermons has been a comfort.
Their 3-year-old son, Reese, has kept her busy, which has been "a lifesaver."
Frericks also has thrown herself into the task of building awareness about CDH and raising money for research.
She and her husband have joined with another family whose baby died of CDH at St. Louis Children's Hospital in raising money for the Breath of Hope Foundation, which collects and distributes money for ongoing research into the treatment and cure of CDH.
A check for $15,000, collected through memorial donations and fundraisers, will be presented by the families to Breath of Hope on Tuesday in St. Louis. The money will be directed toward the research of Dr. Brad Warner, surgeon-in-chief at St. Louis Children's Hospital and Apolline Blair Professor of Surgery at Washington University School of Medicine.
"Caring for these two babies was a very memorable experience for me, because I feel we offered everything possible for them and it didn't work," Warner said. "It was devastating, because I feel there is much room to improve the survival rates for CDH."
Warner's first goal is to recruit a renowned fetal surgeon with an interest in both research and technique. Under this surgeon's leadership, Warner said the hospital should have a tissue repository to save damaged lungs and learn more about the biology of lung tissue and its development so that ultimately doctors could repair or grow a new lung.
Warner also will focus his research on gaining a better understanding of the hypertension of the pulmonary artery, which would allow for new treatment strategies to be developed.
"I am particularly interested in the fact that Dr. Warner is focusing on pulmonary hypertension, because that is ultimately what caused Cadan's death," Frericks said.
Frericks, a part-time instructor at John Wood Community College and part-time waitress at Tower Pizza and Mexican, boosted awareness of CDH on Friday at the Tower. Staff wore shirts and bracelets to draw attention to CDH and had pamphlets available.
The staff will do the same this Tuesday.
Tuesday has been recognized as Congenital Diaphragmatic Hernia Awareness Day in Quincy and in Illinois. Governors of 29 other states also have recognized the awareness day.
People are encouraged to wear turquoise on Tuesday, the color devoted to CDH awareness.
"The ultimate goal is to get this recognized at the national level," Frericks said.
She plans to continue her work to raise funds for CDH research and promoting Breath of Hope.
"I hope this doesn't happen to anybody else in the community," Frericks said. "But if it does, they have an organization they can go to."
ON THE WEB
www.breathofhopeinc.com
-- kwilson@whig.com/221-3391
