They told her she would never get this far

CYSTIC FIBROSIS
They told her she would never get this far
By JAN JARVIS
Star-Telegram Staff Writer


After giving birth to twin boys, Carol Shepherd had but one wish: to live long enough to see her sons turn 10.
She knew that it was a long shot.
Doctors told her that she would probably be dead within two years. But Shepherd, of Fort Worth, was determined to see her sons baptized. She got her wish and then some.
"The Lord blessed me with more than twice what I asked for," she said.
In May, when James and John graduate from Texas A&M University, Shepherd has every intention of being there. It is the latest in a long list of milestones -- including sending the boys off to elementary school, watching them get their driver's licenses and seeing them go to prom -- that Shepherd feared she would never witness.
At 5 years old she was diagnosed with cystic fibrosis, a chronic disease that affects the lungs and digestive system. Since then, Shepherd has lived from one challenge to the next.
Now 50, Shepherd recalls how when she was 9, her sister revealed that she wasn't supposed to live past 13.
But Shepherd has lived as if there were no deadline in sight.
She ignored doctors who told her that she would probably never get pregnant. When some people suggested that she end her pregnancy, she said it was out of the question. In 1985, she became the first U.S. woman with cystic fibrosis to give birth to twins.
Living to 50 is remarkable for someone with cystic fibrosis, said Dr. Bruce Marshall, vice president of clinical affairs for the Cystic Fibrosis Foundation, based in Maryland.
"It's even more remarkable for a woman with CF to get to watch her children grow up and graduate from college," Marshall said.
Defying the odds
When her twins were born, the survival rate wasn't very good for a woman with cystic fibrosis giving birth to one baby, let alone twins, said Robert Shepherd, Carol's husband of 26 years.
"One in four women didn't live long enough to see their child's second birthday," he said. "My take from that was the sheer exhaustion of motherhood was just too much."
Women with CF used to be told not to get pregnant because it was too physically hard for them, said Dr. James Cunningham, Cook Children's Medical Center's medical director of pulmonology and co-director of the Fort Worth Cystic Fibrosis Center.
"Now many women with CF have very healthy pregnancies and deliver healthy babies," he said.
'Treasuring every day'
The discovery of the CF gene in 1989 led to treatment advances and improved the quality of life, Cunningham said. Today, the median age of survival is 37.
Carol Shepherd did everything she could to make sure that she would be around. When her children were infants, she worked in breathing treatments and medications between diaper changes and feedings. Their home in east Fort Worth often became a makeshift hospital, with IVs and medical equipment.
The couple attend Lamar Baptist Church in Arlington and relied on their faith to help them get through every medical ordeal. Family and friends also helped.
The Shepherds learned to cope with frequent hospitalizations. Over the years, Robert Shepherd, who works at Bell Helicopter in Hurst, often hurried home to give his wife a break from parenting tasks.
The boys knew that their mom went to the hospital a lot more often than other moms, but "we didn't really grasp the concept that mom was sick," said John Shepherd, who attended Dunbar Magnet High School in Fort Worth with his twin.
When she was hospitalized at Cook, which cares for all area CF patients because most tend to be young, the boys could play video games in the playroom, Robert Shepherd said.
"I can remember thinking the hospital was a new and exciting place to explore," John Shepherd said.
When the boys started college, they began to realize just how amazing their mother was.
"I did research about CF, and I could see how much of a miracle it is that she is still alive," said John Shepherd, who, like his brother, is majoring in engineering.
Carol Shepherd hopes for a cure but said, "I'm just trying to go on living and treasuring every day." She volunteers with the Cystic Fibrosis Foundation and offers hope to the families of children with the disease.
"Now I'm thinking about weddings and really hoping to be a grandmother," she said.
By the numbers
30,000: Number of people who have cystic fibrosis nationwide
1,362: Number in Texas
70: Percentage of people diagnosed by age 2
40: Percentage of the CF patient population age 18 or older
37: Median age of survival in 2006
5: Median age of survival in the 1960s
Source: Cystic Fibrosis Foundation