Never going it alone
Monday, August 12, 2002
READING, Pa. -- While the doctors who separated conjoined twins in Los Angeles talk about the little girls' prospects for healthy, productive lives, another pair of conjoined twins say that's exactly the life they've lived for 40 years.
The women, one a former hospital worker, the other an aspiring country-western singer, say the separation isn't necessary.
"I don't think it should be done," Lori Schappell told The Associated Press in an interview at the twins' apartment in a high-rise seniors complex. "You don't mess with what God made, even if it means you enjoy both children for a shorter time."
Lori and her sister Reba live a life few people can imagine.
They have two distinct brains, but they are joined at the skull, so where one goes, the other must. Reba, who has spina bifida, is 4 inches shorter than Lori, so her sister wheels her around on an adaptive wheeled stool.
Both sisters graduated from a public high school, and each has taken college classes.
Reba went along for six years while Lori worked full-time in a hospital laundry, a job she gave up in 1996 so Reba could launch a country-music career.
While Reba doesn't have a record contract yet, she has performed in Atlantic City, N.J., Japan and Germany, belting out her hoped-for single, "The Fear of Being Alone."
"It's not autobiographical," Lori insists, dancing along as her sister sings to the demo tape.
The twins are now considering moving from this city about 50 miles northwest of Philadelphia to Nashville, Tenn., so Reba can follow that dream.
"I love it there. I'm a Southerner," said Reba, who changed her name from Dori.
Planning their goals
"She has goals in life," said Lori, the ambulatory and more assertive twin. "The only goal I have is marriage and kids -- if it ever happens."
Their lives as conjoined twins -- and the question of whether to risk potentially life-threatening surgery -- are back in the spotlight with the successful separation Tuesday of the 16-month-old Guatamalan twins, Maria de Jesus Quiej Alvarez and Maria Teresa, who had been joined at the head.
"I don't live every day thinking about the fact I'm a conjoined twin," Lori said. "It's not the biggest thing of my life."
Separation would be a risk for the Schappells, who are attached at the left side of each of their skulls and share bone, blood vessels and tissue near their brains.
"The wisdom, all along the way, has always been that it would be more harmful to try and separate them," said Dr. John M. Templeton Jr., a former pediatric surgeon at Children's Hospital of Philadelphia who has worked with the Schappells and other conjoined twins.
"I think it would produce brain damage for both of them. And it's just as likely that one or both of them would die," he said.
The Schappells, like the Guatemalan twins, are among the 4 percent with the condition joined at the head. Nearly three-quarters are joined at the chest, the rest at the abdomen or pelvis.
The condition occurs when identical twins from a single embryo fail to separate. About 70 percent are female.
Of the approximately 200 pairs of conjoined twins born alive each year, about half die before their first birthday, according to Dr. Marcelo Cardarelli, a pediatric heart surgeon at the University of Maryland Medical Center who helped separate twin girls from Uganda in April.
Only a handful are separated. Some who are not have lived long into adulthood.
Eng and Chang Bunker, the 19th century "Siamese Twins" who gained fame as a circus act, lived to be 63. The Schappells, who were born into a family of eight children, knew another pair of conjoined twins, Yvonne and Yvette MacArthur, who died in 1993 at age 43. They also know conjoined twins who are still going strong in their 60s.
Lori and Reba don't ask doctors about their life expectancy. But they say they know that death may one day separate them.
When one does die, they want doctors to attempt surgery so the other can go on living, a procedure that's never been successful in a case like theirs, according to Cardarelli.
"I'm not going to ask her to die for me, and she's not going to ask me to die for her," Lori said.