The twins have taken over our cramped West Side apartment, their toys clogging the living room, cribs and changing table occupying what used to be a dining alcove, and their various strollers parked in strategic corners to avoid the mess. In the middle of it all, Betsy and Elana cruise from lap to coffee table to couch, playful 14-month-olds happy in our arms, happy tripping over one another.
They could be any toddlers—they are any toddlers—but for the fact that they were born with cleft lips, the most common congenital facial deformity, occurring in 1 out of 700 births. Elana’s was the more serious defect; she also had a cleft palate. But you can throw out all preconceptions of what this condition looks like, because to see our perfectly formed girls today, you would never know it, save for one fading, thin scar on Betsy and two on Elana.
Those three lines are the only evidence of a remarkable, if exhausting, process in which we teamed with two doctors whose extraordinary—and extraordinarily demanding—course of treatment promised to make Betsy and Elana whole. In the months after their births, before any intervention by the surgeon, my wife, Robin, a nurse and M.B.A., and I, a correspondent at CNN and CNNfn, would undertake the reshaping of our twins’ faces—a process the babies were none too pleased about but that would have a stunning impact, as anyone looking at them now can see. When parents talk about “molding” their children, they’re usually talking about shaping a child’s character, values, and ethics. For us, however, the phrase has a considerably more poignant and literal meaning. We molded the faces of our twin girls.
In utero, a baby’s head grows forward from both sides of the spinal column and normally fuses along the two vertical ridges on the lip. For cleft kids, though, the fusing is incomplete. Firstborn Betsy came out with a unilateral cleft—a gap in the upper lip below her right nostril, extending into the gum. Elana’s more serious cleft palate was literally a hole in the roof of the mouth, along with a bilateral cleft lip, which is a pair of gaps below each nostril into the gums. The middle portion of the upper lip, as well as the gum and bone behind it—all composing the premaxilla—jutted out of her mouth at a 45-degree angle.
Night after night—fifteen weeks for Betsy, nineteen for Elana—we used orthopedic plates, little red rubber bands, and a variety of surgical tapes to reshape our babies’ lips, gums, mouths, and noses in preparation for eventual surgery. We worked under the guidance of Barry Grayson, an innovative orthodontist who is a member of the cleft-palate team at New York University Medical Center’s Institute of Reconstructive Plastic Surgery. Grayson and his partner, Court Cutting, a surgeon (and yes, Cutting is his real name), are revolutionizing the treatment of children with clefts by taking advantage of the fact that babies’ tissue, cartilage, and bones are highly malleable.
In the months prior to Cutting’s surgery, Grayson’s orthopedics—which took us hours each day to place and manipulate—aligned the lips, gums, and nose, minimizing imperfections to the point where Cutting, the city’s preeminent cleft surgeon, was able to fix the entire region in one operation.
“Surgeons usually take the attitude: Let’s get it done now. The orthodontist is used to using the dimension of time: Let’s apply a little force and see what the force does over a month,” Cutting told us. “We’re combining the best of orthodontic and surgical traditions.” Parents must agree to become full partners in the process. “You’ll do one third of the work, Dr. Grayson does a third, and I do a third,” Cutting said before the girls were born. “You’ll need to roll up your sleeves and get in there.”
It was a long road to the operating table, but it had been a quick one to parenthood. Though Robin was 39, she became pregnant within two months of our decision to conceive, without benefit of in vitro or fertilization drugs (and despite the insistence of an Upper East Side fertility specialist to go that route). When the first sonogram, at eight weeks, revealed twins, Robin burst into tears. “How did this happen?” she asked, sobbing.
One of the sonographers responded with an unexpected question: “Do you like yams?”
“I eat them all the time,” Robin replied.
“That’s it,” she explained with the satisfaction of a scientist whose hypothesis had once again been proved correct. “All our mothers of twins eat yams.”
The first hint of trouble came at seventeen weeks, from an obstetrician at New York-Presbyterian Hospital. A sonogram showed that the fetuses shared the same amniotic sac, with just a thin membrane separating them—a condition, he warned, that sometimes led to complications.
“I’ve seen this many times,” the doctor explained. “When the babies come out well, it is wonderful. But when there is a problem it can be very, very sad, very hard. Many people in this situation might consider terminating.”
The suggestion stunned us. Offered no evidence of any defect, we left his office and never returned. Robin scheduled an appointment for the next day with Irving Buterman of Lenox Hill Hospital, a veteran obstetrician recommended by a friend of a friend. The next few sonograms indicated that everything was progressing well despite the thin membrane. It wasn’t until a detailed sonogram at 21 weeks that we learned that there was indeed a problem: a tiny space in the jawline of each fetus, the sure sign of a cleft.
The sonogram triggered a battery of questions: How serious were the clefts? Were they only cosmetic defects that could be fixed? If so, how good a repair could we expect? Were there other problems? Would our children be able to have normal lives? “You have to go see Dr. Cutting at NYU right away,” advised Cecilia Avila, the obstetrician overseeing our sonographers at Lenox Hill.
Cutting is a surgeon who appears to have been cast in Hollywood. Handsome and gracefully graying, he exudes the credibility of a specialist who is both skilled and passionate. He flipped open his laptop, clicked several times, and, as the computer displayed a detailed video animation of facial anatomy, the surgeon described, step by step, the procedures he would undertake for each child. It was impressive, highly clinical—and overwhelming.