Gift of Freedom
"Mom, where's Kathleen's other leg?" asks 3-year-old Annelise, trying to wrest the infant from her sister. "She doesn't have another leg," replies her mother as Charity, the other twin, sleeps on in the crib.
Observes Mikayla: "It's a lot different now that they're separated."
Months before their baby girls were born last February, when they realized the infants were one—not just genetically, like all identical twins, but physically, with a bond of flesh and blood—Vaneice Lincoln and her husband, Greg, had prayed for a miracle. It took more than a year, and some of the best medical expertise in the nation, but their prayer was answered. On Oct. 1, after a 31-hour surgery at Children's Hospital and Regional Medical Center in Seattle, Kathleen and Charity were successfully separated. Unlike the well-publicized conjoined twins Jodie and Mary, who were parted in England in November—resulting in Mary's death—both babies are healthy. "It's incredible what has happened to the girls," says Greg. "They have a very bright future."
That didn't seem within the realm of possibility when Vaneice, 30, paid her first visit to the obstetrician in August 1999. "I have good news and not-so-good news," she told her husband when she got home. "We're having twins. But they might be joined." Greg, 32, didn't believe it. They had used no fertility drugs. Vaneice was only eight weeks along—maybe it was a mistake. Because of their fundamentalist Christian faith, there was no question of abortion. But after a second test a month later, the technician went silent while she performed the ultrasound. "She said, 'I have some concerns,' " recalls Greg. "And my heart just—what do you say when it feels like it's gonna fall out of you?"
The Lincolns, however, didn't panic. To make room for two more, they moved to a new split-level in Lacey, Wash., just after last Thanksgiving. And before Christmas, they traveled to Seattle, an hour away, to consult pediatric surgeon John Waldhausen about the possibility of separating the twins. The couple made it clear they wouldn't even consider surgery unless both babies had an excellent chance of surviving. Waldhausen, 42, who had assisted in only one such procedure before, opened a medical text to show the Lincolns a diagram of their children. Classified ischiopagus tripus, joined from breastbone to pelvis, such twins are usually female. "Geneticists disagree about whether they are caused by fused ova or one egg that divided abnormally," explains Waldhausen. Only one in 200,000 births culminates in this particular type of conjoined twins, and 75 percent of such babies born die within a day. Says Vaneice: "It was devastating."
Fortunately her own pregnancy proved problem-free. Vaneice put on 40 lbs. and, unlike many mothers of normal twins, needed no bed rest. On Feb. 21, weighing in at 13 lbs. 3 oz., the twins were delivered in a scheduled cesarean section at 37½ weeks at the University of Washington Medical Center. Kathleen—the name Vaneice had picked out—emerged first; then came Charity, named by Greg. Vaneice held them for a moment, swaddled, before they were whisked off to the Neonatal Intensive Care Unit. When Greg went to see them, the nurses said, "Congratulations, they're beautiful." But when he saw his girls on the warming bed—conjoined, despite all the prayers—the good wishes seemed a cruel joke. "I loved them, they were beautiful to me, but I thought, 'I have two deformed children,' " he says. "It was like I had lived my whole life in one room of a house, and suddenly that day another room opened up. And that room was pain."
The logistics of baby care were more difficult. When the Lincolns brought the twins home 10 days later, it was hard to figure out how to hold them. The biggest car seat they could find was fitted with buckwheat pillows made by Greg's mother, Lorinda, and a friend sewed baby gowns together to create a sack with two head openings. Vaneice, meanwhile, struggled to get the twins to nurse and sleep at the same time. Perhaps the greatest strain was emotional. "You grieve for what your kids will have to go through," says Vaneice, imagining constant surgeries and the ridicule of other kids. She rarely discussed the twins with anyone but her husband. "I felt like the only person who could really understand was Greg," she says. "Because he was there too." For his part Greg is grateful the girls weren't born 10 years ago, when he and Vaneice were newlyweds. "We were a lot more immature," he says. "There would have been more stress on our relationship."
They first met as children at summer camp meetings of the Church of God (Seventh Day), held in Vaneice's home-town of Meridian, Idaho, but didn't really get to know one another. "Why didn't you talk to me?" Greg asks his wife. Teases Vaneice: "It was about hair, I think." (She thought his was too bushy.) Born in Tacoma, Wash., the third of five children, Greg wound up back near Meridian, with shorter hair, as a college student studying accounting at Northwest Nazarene University. The youngest of three girls of Charles Ward, a real estate agent, and his wife, Lola, a first-grade teacher, Vaneice started seeing Greg at church functions. They married a year later.
Even before the twins, Vaneice had time for little else but mothering. Mikayla, Troy, 6, and Annelise are being homeschooled. Greg had planned to enter the ministry but was forced to drop out of Bible college when he came down with Crohn's disease, a debilitating gastrointestinal condition. Unable to work for a year, he had just hired on for a modest wage at an accounting firm when Vaneice found out she was pregnant again. Fortunately his insurance covered the twins.
Wary of inevitable stares and questions, the Lincolns grew increasingly reclusive after the twins were born, rarely venturing out except to go to church or to see Greg's parents, Bob, a carpenter, and Lorinda, a homemaker, who live 15 minutes away. One day, when they were getting fast food at a drive-through window, Mikayla wondered aloud why they weren't going inside. "You don't want people to see them?" she asked. The blunt perception stung her parents. "What message are we sending to our kids, to other disabled people?" Greg asked himself. "That we're ashamed?"
From then on, he and Vaneice resolved to be more open. In time, the twins developed distinct personalities—Charity, more active; Kathleen, laid-back and chattier. But while Charity did much of the nursing, Kathleen's cheeks got chubbier. "Charity would eat like a horse, but Kathleen was getting all the calories," says Dr. Waldhausen. "They probably would not have thrived." The specter of the parasitic twin loomed larger after the conjoined twins in Manchester, England, became the focus of controversy, since separating that pair meant that one would die, while not operating meant that both would. (The two were separated Nov. 6 after British judges ruled that the stronger child should be saved at the expense of her weaker sister, who had a partially developed brain.) "You need the wisdom of Solomon," says Greg. "I could not decide. I could not kill one of them."
Fortunately for the Lincolns, after batteries of MRIs and other tests, doctors concluded that both Charity and Kathleen stood a good chance of living if separated. They shared a liver, a bladder, intestines, a bowel and a pelvis, all of which would be split. One girl would have a kidney and two ovaries, one two kidneys and one ovary, but each would have functional reproductive and excretory systems. Each would have a single leg. The only questions were whether there were two bile ducts and whether there were enough intestines for both girls.
Surgery was planned at 7 months, when the twins would be strong enough to endure it but not so old that the separation would be emotionally traumatic. In preparation for the operation, balloons were inserted under the skin and slowly expanded to stretch it so there would be enough skin to cover the wounds when they were parted. A week before the date marked as "The Big Day!" on the calendar, "I was rocking them, and all the other kids were out playing," Vaneice says. "It was quiet. And the magnitude of what they were going to go through, the risk—it all just kind of hit."
At Children's Hospital, Greg and Vaneice were calmer than the 10 family members who came to offer moral support. As the twins were wheeled off to the operating room at 7:30 a.m., Greg's father videotaped through his tears. "Greg's more even-keel than I am," says Bob Lincoln. "And Vaneice—she's rock-solid." For two hours they waited for word about whether the twins would be separated or closed back up. The head nurse came out: It was a go.
Inside the operating room, 30 medical personnel—including pediatric surgeons, urologists, orthopedists, plastic surgeons, anesthesiologists and radiologists—were separated into two teams, one wearing yellow star-spangled hats for Kathleen, the other purple for Charity. The babies' fingers had similar color-coded tape, as did all the tubes and wires attached to each child. Waldhausen, who coordinated the surgery, was there for the whole 31 hours, with occasional rests. "If you break down the surgery, each component is something we do routinely," he says. "The difficult part was organizing it all into one whole so that it flowed smoothly." Surgeons divided the liver, bladder, bowel and intestines. The bone from the girls' third leg was used to close their pelvic girdles, and the skin and dimple from that extra knee created a navel for Kathleen. After 23 hours, the twins were apart for the first time. Charity remained in the original OR, while Kathleen was moved to a neighboring one. After six more hours, Charity's team finished sewing her up; 90 minutes later Kathleen finally went to recovery. Says Grandmother Lincoln: "They just weren't meant to die."
Greg and Vaneice lived in the hospital room as the twins healed. Kathleen did so more quickly, often reaching toward Charity, who had to undergo another operation to finish closing her wound. Charity did not like having dressings changed, and Kathleen became suspicious of strangers, but both were good sports about the many tests, only occasionally whimpering, often in unison. But in just three weeks, they were home. When the Lincolns' minivan pulled into the driveway, the family greeted them with balloons, welcome home signs and a cake.
The girls recently had their first taste of solid food—rice cereal—and are undergoing physical therapy three times a week. Charity has grown more gregarious and can roll over. Kathleen, meanwhile, is saying "Dada" and "Mama." Both twins have an ostomy, a piece of intestine pulled through the abdominal wall and attached to a plastic bag to collect feces. With another operation, the children may be able to excrete normally, but it is too soon to tell. Their bladders and urinary tracts are in working order. Though each girl has only one leg, with operations and prostheses they may someday be able to walk. "Lord willing, they will," says Grandfather Lincoln.
In late November the twins took a trip to Idaho—this time in individual car seats—for a special Thanksgiving with Vaneice's parents. And they are thankful. "It wasn't the miracle we wanted," says Greg. "But I believe God heard our prayers. It was against the odds that they'd be born alive, that both girls have every part they need to live." The Lincolns count their blessings, all five of them—and hope the Lord doesn't send them any more. "I think maybe I'm done," says Vaneice. "Five's a good number."