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.
Over the next two weeks, we learned everything we could about clefts. I spent hours surfing the Internet, which is loaded with depressing material; joined a chat group, Cleft-Talk, for parents of kids with clefts; and researched scientific and medical journals, reading dozens of studies. We spoke with geneticists, obstetricians, neonatologists, pediatric cardiologists, radiologists, plastic surgeons, and psychologists.
We drove to Philadelphia for a day of meetings with specialists at the Children’s Hospital of Philadelphia (CHOP), one of the nation’s top pediatric medical facilities. A neonatologist and a fetal surgeon there warned us that twins in one sac could be born as early as 31 weeks, and on average would come out at 321⁄2 weeks, meaning there was a significant risk the babies would be born before their lungs were fully developed.
Nevertheless, all the ultrasounds and fetal echocardiograms indicated that, other than the clefts, the babies were fine. Their hearts were beating perfectly, the four chambers all well formed, their brains were developing normally, and their limbs were in perfect alignment. And they were active. In fact, during the sonogram at CHOP we watched as Betsy (then “Twin A”) kicked at Elana’s face (“Twin B”), Elana employing a rope-a-dope position to protect herself.
Most important of all in our preparation was meeting other parents and their children who had been through cleft surgery, patients of Grayson and Cutting’s who were willing to share their experiences.
We took the subway up to Inwood to meet the Ruckers, recent arrivals in New York from Utah. Lori and Justin’s daughter, Abby, was born with a cleft lip and palate. After reading so much about the potential problems confronting children with clefts and having had some very sober discussions with doctors, we found meeting Abby—a delightfully playful, gorgeous 9-month-old—incredibly uplifting. Only upon close inspection could one see the faint red line running down below her left nostril.
But Abby had a unilateral cleft, not the more complicated bilateral. So we visited families in Cobble Hill and Woodbury to meet kids with repaired bilaterals. They too looked wonderful (two pale red lines instead of one). The parents did warn us, however, that preparing the kids for surgery was a huge undertaking. “I can’t imagine two babies with clefts,” remarked one mother, staring at Robin’s stomach.
I asked Cutting’s staff if we might meet any twins he had treated. There was just one pair: daughters of an Orthodox Jewish woman from Brooklyn who didn’t even know she was having twins, let alone with clefts, when they were born fifteen years earlier. The Kizelnik twins, Dina and Devorah, offered to visit us. The next Sunday we held a “cleft graduates” open house at our apartment, hosting both the Kizelniks and another family whose baby daughter had recently had bilateral surgery.
Night after night, we used orthopedic plates, little red rubber bands, and a variety of surgical tapes to reshape our babies’ lips, gums, mouths, and noses.
The teens were beautiful girls who had clearly shrugged off their birth defects as “no big deal” and were fascinated to meet a baby who had just completed the surgical journey they had traveled so many years before (and had no memory of). The kids we met, as well as their parents, inspired us. We had completed our homework.
Not long after, my father lost his life to colon cancer after a courageous five-year battle. During his final hours, I wept by his bed at Boston’s Brigham and Women’s Hospital, knowing my prayer that he would meet his grandchildren would not be answered—and pledging to raise daughters who would make him proud.
Robin worked through her 34th week, defying the medical experts by delivering the twins at 38 weeks, essentially full term, in July 2002. They were even facing head down, leading us to anticipate a vaginal delivery. But after Robin received the epidural, Twin B’s heart rate began declining, triggering Buterman to declare, “We’re going in. I can’t take the chance.” Ten minutes and one C-section later, our twins came out kicking and screaming, Betsy weighing in at 5 pounds 7 ounces, Elana at 4 pounds 8 ounces.
“While I was pregnant, I saw them twice a week on the sonograms,” Robin recalls. “So when I met the babies in person, the clefts were exactly what I had expected. I was thrilled when the doctor placed the babies on my chest.”
The newborns were brought to the Neonatal Intensive Care Unit, where they would be monitored closely and receive special care. We took Betsy home three days later, while Elana stayed in the NICU for ten days owing to a low blood-sugar count.
Because of the clefts, the twins could not achieve proper suction to breast-feed or suck from a regular bottle, so Robin and I learned to use the Haberman Feeder and the Mead Johnson bottle, designed for squirting formula into the baby’s mouth. Proper feeding would be one of our great challenges.
At 1 week of age, Betsy had her first appointment with Grayson to have a mold made of her mouth. Elana, freshly out of intensive care, went the following week, and a week later the twins had their molding plates: clear, hard-plastic orthopedic devices that would shape their mouths during the coming months.
As different as Betsy’s and Elana’s conditions were, so too were the purposes of their plates. The goal for Betsy was to create symmetry in the gum ridge of the upper jaw (also known as the alveolar ridge). The hard plate would force the two sides of the gum pads to grow toward each other. Pressure from the plates would also push the upper gum pad in, further helping to reduce the cleft, because the farther back the gum pad, the more coverage the lip on either side of the cleft could provide.
Elana’s premaxilla projected out of her mouth toward the tip of her nose. So her plate’s primary purpose was to gradually push the premaxilla back into the mouth.
“It fits like a keystone into a Gothic arch,” Grayson explained. He described the molding process in artistic terms learned during his days as an art major at the original High School of Music and Art on 135th Street. “Sculpture was my specialty—I spent four hours a day working in a studio,” he recalls. “The nose, lips, and gum pads are a sculptural form. We’re modeling and shaping them.”
But if the concept is artistic, the day-to-day routine is hard labor. After cleaning the plate, we would cut patches of thin, transparent adhesive dressing called Tegaderm to be gently applied onto each cheek, an attempt to minimize irritation and bleeding. (Unfortunately, Tegaderm could do only so much; the babies’ cheeks were beet-red for months.) Then we’d cut rectangles of surgical adhesive tape, insert one end of the tape through a tiny red rubber band, and fold it over to secure the band. The rubber band looped over a post protruding from the plate (Betsy’s plate had one, Elana’s two). That was the prep work. Then came the nightly battle with the babies.
“It was frustrating,” Robin recalls. “Often the Tegaderm stuck to itself or we failed to cut the tapes the proper length and would have to start from the beginning.”
It was on to the changing table for the first baby of the evening. We took turns assuming the two primary job roles: restraint and insertion. One of us would hold the baby down with her hands to her ears, while the other would insert the plate into the mouth, making sure it was properly aligned. Then, while holding the plate in place, we pulled each piece of tape toward the back of the head, which applied pressure to the plate. Finally, we stuck the tape onto each cheek, then reinforced with additional tape.
After completing the procedure on baby No. 1, we would start again with No. 2. At first, the process often took 45 minutes per baby. We quickly learned the twins had healthy lungs. Crying is too serene a verb to describe their reaction. Bloodcurdling, the-world-is-coming-to-an-end screaming is a more apt description of our nightly descent into noisy chaos. And as Betsy and Elana grew, they gained strength with which to protest. Sometimes the babies would pull their plates out or rip the tape off, even though they wore mittens to prevent them from doing so. And we’d start all over again.
Every week, Grayson or one of his associates would adjust the plates, adding acrylic to create extra pressure, or shaving off material to reduce irritation to portions of the gum. The modifications were especially important for Elana because the extra acrylic would gradually force the premaxilla down and into the gap at the front of her mouth. During the first month, there didn’t appear to be much progress, only irritation inside the mouth. But in the second month, September, changes began. Elana’s premaxilla was moving into place in the upper jaw. Betsy’s cleft was narrowing as well. We began to visualize exactly where Cutting would be sewing the lip and gum together.
While the special bottles allowed us to squeeze formula into Betsy and Elana’s mouths, there was nothing easy about it. Imagine trying to drink from a bottle if your upper lip were not intact. For Betsy, the plate was an annoyance, a chunk of plastic now covering much of the roof of her mouth, though after several weeks she adapted. For Elana, it was doubly difficult because of the cleft in her palate. In theory, the addition of a molding plate was supposed to make drinking easier for Elana, since it covered the hole in the roof of her mouth, effectively creating an intact palate. But we had no such luck. Elana continued fighting off the bottle, often crying while she was being fed. Her feeding aversion grew with age.
Of course, we endured. “I quickly learned to block out the screams, as I knew I had a task to complete,” Robin says. “I became very focused on our goals, to the point where it became more important than my child’s immediate anguish.”
At midnight on November 11, 2002, I vented into my diary:
“It is hard to describe how much this stinks, making your own newborn child writhe with discomfort. One moment she is smiling and cooing. Then, as we place her down on the changing table and restrain her, the coos turn to yells. Tonight we have to pull the tape off Betsy’s right side three times to get it properly aligned; each time Betsy’s screams and efforts to kick and fight loose are at a maximum level.”
The next focus of molding was the nose. Children with clefts tend to have flat noses, often due to collapsed nasal cartilage and short columellas, the structure separating the nostrils.
Nose molding for Betsy began in her tenth week (seven weeks after she first began wearing the plate). Grayson added onto the front of the plate a metal stent covered with soft acrylic. As we put the plate into the baby’s mouth we now also inserted the stent into the nostril to help push the nose up and out and to extend the columella, which would help Cutting form a symmetrical nose.
Elana’s nose molding started at thirteen weeks, once her premaxilla was fully inside her mouth. Since her cleft was bilateral, two nose stents were added, one for each nostril.
“It’s a godsend,” said Cutting. “Having the columella stretched and the nasal lining stretched makes it possible to get a good-looking nose.”
From cutting tapes to cleaning molding plates and inserting them—not to mention changing diapers and feeding the twins—the workload was constant. I found that the most relaxing part of my day was the subway ride to and from the office. Robin, at home with the kids, really had no break, even with one nanny helping during the day and another on duty overnight.
“All I saw was the four walls of our apartment,” Robin recalls. “The nanny and I would sit on the couch just feeding the babies. For the second time in my life, I became addicted to soap operas; they were my only mental break.”
Four months after her birth, Betsy went in for surgery—though the morning began with Elana’s weekly adjustment at Grayson’s office. Then it was upstairs to NYU’s day-surgery floor.
Betsy was so cute, so innocent, cooing and smiling at us as we held her in the waiting room. Is this how Abraham felt as he brought Isaac to be sacrificed? I wondered. Thank goodness she will never remember any of this. We played a Baby Einstein video for her as hunger from the presurgery fasting gnawed at her stomach.
Four nerve-racking hours later, the alert came that Betsy was out of the OR. I darted into the recovery room to see a nurse holding our baby’s limp body. I took hold of Betsy, my eyes welling. Yet, even bloody from the operation, her nose was perfectly shaped and her lip was sewn up artfully.
During the recovery period, Betsy had to wear arm restraints that prevented bending at the elbow, to ensure that she wouldn’t play with her lip. And for five weeks we had to apply a strip of surgical tape across her lip to protect the healing stitch line. But applying the one piece of tape was nothing compared with the previous fifteen weeks. It was thrilling to see that she was on her way.
Betsy’s successful surgery also was an encouragement as we continued taping Elana. Cutting instructed us to further extend Elana’s columella. Grayson and Larry Brecht, a prosthodontist on the team, added plastic to the front of her plate in order to put more pressure on the columella. About three weeks before her surgery, Elana appeared to be in great shape: The premaxilla was in, her lip was in position, and the nose was gaining shape. But the doctors still wanted the columella stretched a bit more. It turned out to be more pulling than Elana could tolerate. The base of her nose began bleeding, forcing us to take the plate and tape off for several days. Frustrated, I feared Cutting would have to delay the operation.
But a week before the surgery date, Cutting examined Elana and declared her ready to go. This time, I was permitted to bring my daughter into the operating room. Carrying Elana down the hall, I thought of my father and the numerous times we had been in and out of the hospital in Boston. I had seen enough of hospitals.
In the operating room, the nurse and I removed Elana’s outfit. The anesthesiologist placed the mask over her face. She cried and then was out. I removed her molding plate for the final time, gave Elana a kiss, and whispered, “You’re going to be a star.”
Six hours and more than 200 stitches later, Elana was lying in the arms of a nurse in the recovery room, crusty blood covering her upper lip. But the lip was intact for the very first time, and her nostrils were well shaped rather than flaring to the sides. Cutting had operated brilliantly.
Late in the day, he came down to the pediatric floor to check on Elana. He examined his latest patient and declared himself pleased with his work.
“I know you’ve been through a horrendous few months,” he told us. “But I don’t know what I would do without parents like you. I’d rather put you through it for a few months instead of the alternative. And look at the outcome! Think of all those parents who have to go through surgery after surgery and their kids don’t come out looking as good.”
At a checkup one week later, Cutting was still exuberant. “I could never get that result on a bilateral without the molding,” he said. “I’ve been doing this for 25 years, and we could never achieve then what we’re able to do now.”
Four months after Elana’s surgery, she looked better than ever. Many people didn’t even notice the two little lines coming down from her nostrils; a few have asked if she had a cold.
Relieved as we were, there was one more major surgery to go: closure of Elana’s palate, which would bring her to anatomical conformity. Cutting scheduled the surgery for July 29, several days after her 1st birthday, a point early enough that the cleft should not affect her speech. Anticipating the surgery, Robin and I decided not to throw a big birthday party. We’d celebrate at 2.
The day before the operation, I took Elana for a swim. Gliding through the water, she shrieked with delight. I looked into her wide-open mouth to look at the cleft—narrow near the front then widening as it extended deeper back. It would be the last time I would be viewing that cleft—thankfully.
The next morning, we arrived at NYU. By now we were pediatric-surgery pros, familiar with the full process. In the recovery room, Elana cried as a doctor suctioned blood from her mouth. As before, her nostrils were packed with blood. To protect against choking, the surgeon had sewn a thread through Elana’s tongue, taping the thread to her cheek. In the event of breathing trouble we were to pull the thread to move her tongue and open the airway. Fortunately, it wasn’t necessary.
Though the surgery was successful, we had one remaining problem to tackle: Elana’s feeding aversion. Her battle against the bottle had forced us to have a gastrostomy tube inserted into her stomach, allowing us to pump formula directly into her. But now we’re teaching her to drink from a sippy cup and eat solids.
Today Betsy and Elana are happy toddlers who have been progressing through milestones: sitting, crawling, pulling themselves up, cruising, and now beginning to talk. Betsy began walking first, but Elana wasn’t far behind. They love climbing stairs, pulling books from shelves and leafing through them, waving bye-bye and blowing kisses, clapping hands, and raising their arms when we shout “Hooray!” These are victories for all four of us, rewards for our perseverance. And the only molding Robin and I will ever have to think about again is that of our girls’ characters.