Joined at the Heart
10/02/2006 at 01:00 AM EDT
Just after dawn on Sept. 6, Angie Benzschawel and Ryan Shaw began the longest wait of their lives. Inside operating room No. 7 at Washington, D.C.'s Children's National Medical Center, an 18-hr. operation had begun to separate their twin boys Mateo and McHale, born in May, joined at the spine. Suddenly, Angie locked eyes with a familiar face coming across the waiting room.
"I can't even talk," she told the dark-haired woman who rushed to her side.
"You don't have to talk," Melissa Buckles replied. "I know."
Two years ago Melissa Buckles and her husband, Kevin, 37, had endured the same wait when their 4-month-old twin daughters Jade and Erin were separated at Children's in a similar operation. Since then, the Buckleses have shared what they know with the Shaws and nearly a dozen other parents of conjoined babies—couples who, like them, began their pregnancies with high hopes, only to find themselves in frightening territory. "I know the anxiety of feeling so alone, of thinking that no one will understand," says Melissa, 33, a former high school teacher. "All we do is tell these families about our own experiences."
For the Buckleses, whose medical bills total more than $3 million (paid for by insurance from Kevin's job as a U.S. Marine drum major), that knowledge is hard-won. Though conjoined twins face daunting odds against survival (see box), today, thanks to more sophisticated surgical techniques, the infants who survive birth stand a far better chance of a healthy life than ever before. "We're finding that unless these babies are born with conjoined hearts or brains, they have a reasonable chance of survival," says surgeon James A. O'Neill Jr. of Vanderbilt Children's Hospital.
The Buckleses, of course, knew none of that in November 2003, when, 18 weeks pregnant, they learned during an ultrasound that they were going to have twins. "Then the technician said, 'Are you Christians?'" Melissa recalls. "I squeezed Kevin's hand and said, 'What's wrong?' She said, 'This is going to be a really long pregnancy for you. These babies are conjoined.'" Says Kevin: "Melissa cried all the way home." She called her parents: "I said, 'Mom, do we have twins in the family?' She said, 'Why?' 'I'm having twins,' I said. 'They're conjoined.' There was just silence, then we cried."
The good news was that the babies had an 80 percent chance to make it to birth. On Feb. 26, 2004, following an emergency C-section, Melissa saw her babies for the first time: "I remember how relieved I was to have made it that far. I reached up, touched their faces and told them I loved them." Though already the parents of Taylor, now 4, and Kevin Jr., 14, Kevin's son from a prior marriage, this time the Buckleses were starting at square one. Very little practical information about the care of conjoined twins existed anywhere; they learned some things from doctors and the Internet, but most of it on the job. Breast-feeding, for instance, wasn't an option because the babies' faces were just inches apart. Instead they had to be fed using doll-size baby bottles. "We had to hold the bottles in one hand, crisscrossed, so each girl could eat," says Melissa. Adds Kevin: "We'd pat one, and the other would burp."
Because conjoined twins are the most identical of twins—even their fingerprints nearly match—the Buckleses had to label diapers to tell the two apart. Says Melissa: "We wondered, 'If I tickle one, will it tickle the other one too?'" Though the Buckleses always knew they wanted the twins surgically separated, by the spring of '04, Erin and Jade were obviously ready too: They had begun arching their backs, "pushing each other's faces away and grabbing each others' pacifiers," says Kevin. Still, nothing was preparation for that June 19, after doctors divided the babies' shared liver and delicately cut the tissue bridge between their tiny hearts. Says Kevin: "Holding them separately, they were so light!" The surgery was not without major complications: Jade was left with a bony growth on her chest, which was later reduced; Erin became paralyzed from the mid-chest down. "I'm still coming to terms with that," says Melissa, who even so, doesn't regret the decision. "It's the best thing you can do for them—separate them and give them individual lives."
By that point the Buckleses had received a call from Kimberley and Wes Gundacker of Waynesboro, Pa., who had seen a news story about them and were also expecting conjoined twins. Melissa remembers when she first told others about her babies, "People just said, 'Oh my God!'" She was careful not to repeat the mistake. "Her first words to me were, 'Congratulations on your pregnancy,' and that was worth a million dollars," says Kimberley. "With Melissa, it was a pregnancy. With everyone else, it was science fiction."
In the next two years the Buckleses would hear from other families too. "My wife says, 'We're here if you want to talk,'" says Kevin. "That usually leads to a phone call that lasts four or five hours. We help them decipher medical terminology, deal with family members—the whole gamut." When Jesse and Amy Carlsen of Fargo, N.Dak. (whose twins Abby and Belle were separated in May), contacted the Buckleses, "Melissa said, 'You have to flip-flop the babies to prevent bedsores,'" recalls Jesse. "She said you have to make sure their arms aren't in an uncomfortable position, because they can't roll over."
At other times the exchanges were heartbreaking. The Buckleses helped the Gundackers through pregnancy, birth and the separation of their twins, Grace and Hope. They were also close by when, in December 2004, the little girls, born with heart defects, died. The Buckleses attended the twins' memorial service—and brought Jade and Erin. "Kimberley's father sat with us, and I got the feeling he wanted to hold Jade, who was about 10 months old," recalls Melissa. "I knew he wouldn't ask, so I offered. He never had the chance to hold his own granddaughters, but she took to him and lay in his arms for two hours. He didn't talk. He just sat there and held her."
For the Gundackers, the memory of that kindness remains indelible, as it does for all the others the Buckleses have helped. In the words of Angie Benzschawel, who is now the mother of two tiny, but separated, twin boys, "The Buckleses feel like family. They are just the best people we've ever met."