Brothers Stefan and Tyler Delp have spent every second of their lives together. They go to the same schools, play the violin in tandem, and recently sang a duet, "Put Your Arms Around Someone," at their school's spring hop. But the boys have never seen each other's faces except for some sleight of hand with mirrors or computers.
The boys, born at Thomas Jefferson University Hospital 19 years ago, are a rare set of identical twins, joined at the head so one faces forward while the other is turned backward. When they walk down the hall at the public high school where they take morning classes, one moves ahead; the other steps in reverse.
If Stefan sees someone on his left and waves, the boys pirouette so Tyler can see him also. "The best thing about having a brother with whom I'm conjoined is that I always have a best friend to talk to," Tyler says.
"Tyler is my best friend," echoes Stefan. "I wouldn't have it any other way."
The other students don't even notice the twins anymore. They are just part of the crowd.
Tim Delp and Nancy Hoffman-Delp, who live in South Jersey, were 26, married four years, and thrilled at the prospect of becoming parents. At 14 weeks into an uneventful pregnancy, they eagerly kept an appointment for a routine ultrasound.
"I could tell right away something was wrong," Tim Delp said. "No one said anything, but the look on the tech's face was one of shock and bewilderment." Two days later, Hoffman-Delp answered an urgent call from her doctor's office. She and her husband were to come in immediately. It was an anxious several hours until the doctor delivered the stunning news: "You are having conjoined twins."
The next day they met George Davis, a perinatologist who specializes in high-risk pregnancies. Every couple of years, he encounters a case like this one. "Dr. Davis, this kind, gentle man, told us that he thought our babies shared facial features - maybe their cheekbones," Hoffman-Delp said. "He said the fatality rate was high - in the neighborhood of 95 percent - and it might be in our best interest to think about terminating the pregnancy."
The prospective parents struggled through the next three weeks, putting their marriage to the test. "I was extremely nervous," Delp said, "and our lives were a whirlwind as we tried to figure it out. We asked: 'Why me? Why us? What did we do?' I couldn't get my arms around the whole concept and I thought maybe we shouldn't have these children." For his wife, there was never any doubt. "I couldn't kill a fly," she said, "let alone think about aborting a child. If my babies were going to die, it was going to be in my arms."
It was a "crazy time," Delp said. The couple wanted no publicity, no "media circus," but word of the birth by cesarean section had leaked, and "media were everywhere." An announcer for the winter Olympics in France that year broke into his broadcast with news of the birth. Some tabloids offered great sums of money to be first with the story. But adhering to the family's wishes, the hospital staff guarded the secret. The florist bearing roses was denied access. Even the priest who had married the Delps was not permitted to visit until the couple gave clearance. Hoffman-Delp had entered the hospital under an assumed name and left at night through a back door, she and her husband in a car followed closely by an ambulance carrying the babies in a seat made by Hoffman-Delp's father, a metallurgist.
"As soon as they were born, I totally fell in love with them," said Hoffman-Delp, a teacher certified in early-childhood education. Gradually, I had to figure out the things that other people don't even think about - how to feed them, how to hold them." Her father made them a bed and a double swing in addition to the car seat.
Stefan and Tyler were born with separate bodies, and each has a full complement of limbs and organs, but they share a circulatory system. That means that when Tyler receives medication to treat his high blood pressure, Stefan, whose pressure is low, must be carefully monitored so his pressure does not plummet into the danger zone, precipitating seizures. When either receives medication - an antibiotic, say - his brother gets it, too.
But neither of the twins complains. Even though the way they stand, leaning into each other, looks uncomfortable, their mother said the boys were used to that position and have never said they were in pain.
For the first three years of the twins' lives, their parents journeyed back and forth to Johns Hopkins Children's Center in Baltimore to explore the possibility of separation. Benjamin Solomon Carson Sr., a renowned pediatric neurological surgeon, had separated a pair of German twins who were also joined at the head. The operation was successful, but it left both brothers with some neurological damage. "To me, that's not success," Hoffman-Delp said. The surgery, had they been willing to try it, would have been extraordinarily complicated. The boys' veins and arteries were like tangled spaghetti, and parts of their brains were intertwined like a pretzel. Carson could not guarantee he could pry them apart without damaging brain function. He gave it a one-in-10 chance. The Delps voted against it.
"This is the most dangerous thing you can do surgically," Carson said. "There is a high risk of bleeding to death during the operation or ending up with severe neurological impairment." The day will come, he said, when more advanced three-dimensional imaging scrutinized before surgery will increase the likelihood of success.
When Stefan and Tyler were six weeks old, the family began receiving weekly home visits from a therapist. Hoffman-Delp learned to feed her babies lying down. The boys turned over and crawled at the appropriate time, but their heads were so heavy that walking was impossible. Hoffman-Delp carried them over her shoulder until they were in third grade.
"There were times," she said, "that I thought to myself, 'Am I ever going to be able to raise these children?' But I have Tim, and Tim's a rock. My family and his family are so supportive. When you are surrounded with positive love, you can handle anything."
The Delps had to count on that love when they received "another blow." Until they were 3, the boys had seemed to be progressing normally, saying the usual words - mama, dada - and developing a fuller vocabulary. But gradually they began to speak less and would continually repeat a single word or phrase. They became less interested in their surroundings, retreating more into their own world.
Their parents knew something was seriously wrong, but it was still a shock when their toddlers were diagnosed as having "splinter skills," a form of autism. Those with the condition are often referred to as autistic savants like the character Dustin Hoffman played in Rain Man. Despite remarkable intellectual gifts, they cannot function independently, and their prodigious talents are often exhibited in obsessive behavior.
"This is more of an issue, and it is more limiting," their father said. "You get past the conjoined part, but the autism lingers. It takes understanding. . . . If only people could peel away the layers to get through to who they really are.
"Today I can say that this experience has made us stronger," he said, "but there was a learning curve. The stares, the rudeness of some people who would point and talk about us as though we were invisible, would send my blood pressure through the roof. But Nancy would use the stares as a teachable moment, telling the children, 'Let them stare. Not everyone is going to like you. Mommy is not conjoined, and everyone doesn't like me either.' "
Enrollment in Cape May Special Services, a school for children with special needs, was a turning point for the Delp family. In an environment where every child has a disability, there is an exquisite tolerance for difference. "When I walk into the school," Hoffman-Delp said, "I feel as though I'm surrounded by angels. The children wear their hearts on their sleeves."
Because of the special attention they and an aide - Chris Hartman, who is with them throughout the school day - receive, the twins have thrived socially as well as academically. Hartman helps calm them when they are overstimulated by a fire drill or jolting noise. "They don't know why they feel anxious," Hoffman-Delp said. "You have to use the same techniques as you would with scared animals. You touch them gently. You keep your voice soft and mellow."
Every Wednesday, Tyler and Stefan are in charge of the bagel cart, pushing a snack-laden wagon through the hallways, selling muffins, apples, and crackers to the staff. Hartman gently reminds them: "Watch behind you," or "Ask Ms. Wendy if she'd like an apple." Sometimes, Hoffman-Delp tags along, praising her sons. Every so often, Tyler will reach up to touch her face and give her a hug. "The boys often struggle with how to respond to cues appropriately, and the bagel cart gives them the chance to learn useful life skills," Hartman said: "How to interact with people, to make change, to find the item someone wants, to tell someone to have a good day."
"They are so bright," Hoffman-Delp said, her eyes misting at the recent memory of reading their names on the honor roll of Lower Cape May Regional High School, where they are mainstreamed every morning. But she was even more thrilled when they sang at the spring hop. "Academics are important, but they are weak in socialization, so this was a big step for them."
Though Stefan and Tyler have many similar interests - both are obsessed with trains and steam engines - each is unique. Tyler loves lobster; Stefan prefers macaroni and cheese; Stefan's favorite cake is chocolate; Tyler's is vanilla; Stefan has a crush on actress and country pop vocalist Jennette McCurdy; Tyler prefers folk singer Steve Forbert. Both are gifted musically; they have taken violin lessons for 11 years and have perfect pitch, and they can recognize all the notes in a piano chord. Asked why music is important to them, Tyler says, "It is my gift from God." Stefan responds, "When I sing my Jennette McCurdy songs, Mom says, 'God's got his hand on your shoulder,' like Johnny Cash's mom said to him."
Their classmates at the public school where the twins have been students for the last two years have been admirably tolerant, principal Joe Castellucci said. "When we told them the twins, whom many had seen around town, would be attending the school, it was a nonissue. They just shrugged their shoulders. Well, OK." In class, a computer is hooked up to a video camera; Stefan sees the teacher in person, Tyler on the computer monitor. Then they switch.
The twins are bilingual in Spanish and will be in an honors program next semester. They study biology and human consciousness, an exploration of the unjust actions of people throughout history. They are fluent computer users.
Their future? Castellucci is confident. "They have goals," he said. "One enjoys movie making; the other is more into music. They'll be in school a few more years, and then we'll have a transition program for them. They are limited by their physicality, but they are bright and capable. With the support of their amazing parents, they can be productive citizens."
As with most children with autism, following a structured routine is key to the twins' ability to cope. Their typical day begins at 6:30 a.m. They shower themselves but need help dressing. An hour later they are in school. Every Tuesday, they have two-hour violin lessons. After school on Wednesdays, they work in their father's laboratory, where they label plastic bottles that will later contain water samples for analysis. Both read books and have laptops on which they do their homework. Lights out is at 9:30 p.m. weekdays, 11 on weekends. "Everything has to be clockwork. . . . We don't need an alarm clock," Tim Delp said. During the season, they play sled hockey on Saturdays and Sundays for the Vineland Sled Stars, a league for children with special needs. In the summer, they swim and work selling trinkets at the local farmers' market. "One rule we don't break," Hoffman-Delp said, "is church on Sunday followed by a big meal in the afternoon like when I grew up . . . and milk shakes at night.
"Theirs is the most intimate, loving relationship two people can have," she said. "No one ever has to be as giving to another person as they are. They can't do enough for each other."
"Inside, they are like everyone else," their father said. "They want love and acceptance. They want people to talk to them and not be afraid of them. I don't really expect people to totally understand. I just want them to accept the difference . . . see the beauty . . . feel the love."
"These children have surpassed my dreams," his wife whispered, her voice choking. "They are my suns."
Conjoined twins occur once every 200,000 births. About 40 to 60 percent arrive stillborn, and about 35 percent survive only one day. Those joined at the head - craniopagus twins, like Stefan and Tyler Delp - occur about once in every 2 million to 2.5 million live births. Such babies have even slimmer odds of survival.
The longest-surviving conjoined twins, Chang and Eng Bunker, whose plaster casts are housed in the Mutter Museum of the College of Physicians of Philadelphia, lived to be 63. They were born in Thailand (then called Siam) in 1811; the term Siamese twins was coined in reference to them. They were joined at the liver, and today would have been easy to separate, physician George Davis said. The twins married healthy sisters and had 21 children between them. There are six to 20 sets of conjoined twins living throughout the world.
There are two theories about their genesis. Identical twins occur when a single fertilized egg splits and develops into two fetuses, usually during the first dozen days after conception. When the split occurs later, separation stops before it is complete, and the resulting twins are conjoined. The degree to which the egg splits and when the split happens determine how and where the twins will be joined.
Another theory suggests that two separate embryos may fuse in early development. In either case, no one knows why it occurs, and there is no way to prevent the phenomenon. No one knows, either, why female conjoined twins are three times as likely as males to be born alive (about 70 percent of all conjoined twins are girls), although more conjoined male twins form in the womb.
- Gloria Hochman
To view a video of Stefan and Tyler Delp in school and at home, go to www.philly.com/delptwins