When I was going through a few papers two days ago, I stumbled upon the story of Caitlin Shroeder, who suffered from hypochondroplasia, a type of dwarfism. Caitlin had decided to go through with lim lengthening surgery to increase by 5.75 inches going from 4′ 2.75″ to to 4′ 8.5″.
I thought the story was very touching and I wanted to post the written story here for any readers who might be interested in reading about her story and the things she had to go through.
Caitlin’s story of physical transformation was even featured on NPR (National Public Radio) and her mother was interviewed (source HERE). if you want to read the transcript or listen to the interview just click on the link above.
The story was written up but the Washington Post (source HERE) author Caitlin Gibson.
Growing Pains: A Teen, Born With Dwarfism, Undergoes the Grueling Process of Limb-Lengthening
Behind the house, in the sprawling back yard filled with picnic tables and trees, guests are gathering for the Fourth of July party. You can’t miss Caitlin Schroeder in the crowd: She’s the pretty teenager in a wheelchair festively draped with multicolored feather boas and strands of beads, the girl with honey blond hair tucked behind her ears and a shy, genuine smile. She’s wearing a T-shirt and shorts, her bare legs covered by a sheet. Hidden beneath the folds are 24 metal pins protruding from her flesh, each with one end anchored in bone and the other secured by a boxy, external plastic frame along her calves and thighs.
It’s a clear midsummer night in 2007, and this is the first social gathering that Caitlin and her family have attended in more than three months, since the surgery that broke both of Caitlin’s legs and drilled the pins into her bones in late March. The fabric draped over her is uncomfortably warm, but Caitlin’s not ready for people to see her legs. She doesn’t like being the center of attention, though her patience with human nature is uncommon for a 13-year-old: I don’t like being stared at, she often says, but I understand why people look at me.
Caitlin came to her grandparents’ party with her mother, Jennifer Anduha, her stepfather, Mike Anduha, and her little brother, Jackson Anduha. They drove in a van equipped to accommodate Caitlin’s wheelchair from their house in Clinton to the lakeside home of Jennifer’s parents in East Berlin, Pa.
Actually, she has just finished getting taller. Since the day after her surgery, Caitlin, who was born with dwarfism, had been lengthening the bones of her legs. Each day, Caitlin used a wrench to turn screws that pulled the ends of her broken bones apart — one millimeter a day in her upper thighs and 0.75 millimeters in her lower legs — and each day, her bones generated new tissue to cross the distance. Her skin, muscles and blood vessels also stretched and grew as her bones were lengthened. In just three months, the agonizing process added 53/4 inches to Caitlin’s height; she is now 4 feet, 81/2 inches tall. She has recently stopped lengthening, an encouraging turning point, but she has months to go before her bones are mended and the devices are removed.
Most childhood surgeries are dictated by need and decided by others, but this one was different. This was Caitlin’s choice. And, eventually, she’ll have other important decisions to make — about how much more pain, for how many more inches, she is willing to tolerate. Limb-lengthening patients such as Caitlin often undergo multiple procedures, lengthening their legs two or three times and their arms once. This is Caitlin’s first procedure, and she imagines that she might have more surgery; but right now, the thought is overwhelming.
As the sun lowers over the lake, Jackson picks up a red ball and begins a game of catch with Caitlin. The two toss the ball back and forth, chatting and smiling, until Jackson becomes distracted and wanders off, leaving Caitlin alone at the edge of the lawn. She sits quietly by herself, unable to rotate her wheelchair in the soft grass. Behind her, the back yard is filled with lively conversation. A few moments pass before Jennifer realizes that Caitlin is alone, and she rushes over, apologizing for not having noticed sooner. Caitlin apologizes, too, for requiring the extra attention. Then she falls silent as her mother turns the wheelchair and steers her back toward the crowd.
In the beginning of her seventh-grade year, Caitlin decided that she would endure whatever it took to get what she wanted. What she wanted was another five inches of height.
Five inches. For an average-size woman, it’s the difference between being considered somewhat short at 5-foot-4, or somewhat tall at 5-foot-9. Caitlin stopped growing at 4-foot-23/4. For her, five inches means the ability to comfortably walk long distances and climb steps; to safely navigate a stovetop; or to play soccer and keep pace with the other kids on the field. Even seemingly minor details of her daily life would be transformed, “Like being able to see my face in the mirror by the front door,” Caitlin says.
Five more inches, and she could reach the plastic dividers in the checkout lane at the grocery store, or the pedals of a car. Maybe it would even mean that she would feel more comfortable among her peers, that she wouldn’t be left behind when her friends went shopping or ice skating.
But five inches comes at a price. The procedure is called limb-lengthening, and it begins with the breaking of the femur and the tibia — the bones of the upper and lower leg — during a six- to eight-hour surgery. Each bone is carefully chiseled in two, leaving a tiny, jagged gap between the broken halves. Metal pins are screwed directly into the bone and held securely in place by a fixator frame, an external device that provides support as it distracts, or lengthens, the bones. Physical therapy begins the day after the surgery.
———— (pg 2)
Caitlin had her surgery at Sinai Hospital of Baltimore. In the beginning, it was the physical pain that overwhelmed her. Then, as the first few weeks passed, her focus shifted toward the more profound realization of her new limitations: no walking, no running, no movement at all without help. A downstairs living room became her temporary bedroom, and she had to shower at Sinai in a special stall large enough to accommodate a wheelchair. In public, Caitlin wore pants or shorts with snaps on the side to fit over her fixators, which she hated to have to do; she often kept a blanket draped over her legs, but people still stared. At night, she sometimes dreamed of running on a soccer field, and woke in a bed where the devices in her legs forced her to lie still on her back. Visits to her father’s house in Alexandria — Caitlin’s parents divorced when she was 6 years old — were impossible because of the steep steps outside the front door; instead, her father, Stewart Schroeder, went with Caitlin to Sinai every Friday for rehab and visited her in Clinton.
The process was overwhelming and lonely; most of her friends didn’t call or visit as often as she’d hoped they would. But after the 3 months of lengthening ended and Caitlin’s bones began to heal, the results of the procedure were slowly revealed. As her bones strengthened and her physical therapy progressed, she was eventually able to stand and walk short distances.
There came a day, just weeks before the Fourth of July party, when Caitlin walked slowly and awkwardly into the first-floor bathroom of her family’s house. There, Caitlin stood at the sink, and — for the first time in her life — she was tall enough to reach the faucet.
Caitlin’s parents never envisioned their child going through such an excruciating process. As far as Jennifer and Stewart are concerned, their daughter has always been perfect; even as an infant, Caitlin looked more like a china doll than a newborn baby, with white-blond hair and huge blue eyes. But when Caitlin was 11 months old, her parents began to notice that her head seemed disproportionately large and her limbs noticeably short. They brought Caitlin to a pediatrician, who referred them to Kenneth Rosenbaum, a geneticist at Children’s National Medical Center in Washington.
Rosenbaum confirmed that Caitlin had dwarfism, though it was not until Caitlin was 3 years old that a blood test was available to positively identify which type of dwarfism she had. Before her fourth birthday, Caitlin was diagnosed with hypochondroplasia, one of more than 200 types of skeletal dysplasia characterized by disproportionately short legs and arms and heightened risk of certain orthopedic complications — such as arthritis, spinal curvature or compression and dental problems. Though the precise occurrence of hypochondroplasia is uncertain, researchers estimate that it occurs in roughly one in every 15,000 to 40,000 newborns, according to the National Institutes of Health. As in Caitlin’s case, the vast majority of dwarfs are born to parents who do not carry the gene for dwarfism, the result of a spontaneous genetic mutation during pregnancy. There are an estimated 30,000 people with dwarfism in the United States, according to Little People of America, the largest organization for people of short stature in the world.
Rosenbaum recommended that the family meet with Dror Paley, a renowned expert in the field of limb-lengthening. Jennifer and Stewart scheduled an appointment despite Jennifer’s hesitancy. “We felt it was our obligation to check out everything our doctors told us to check out,” Jennifer explains, “but I think, in the beginning, there was no doubt in my mind that we would not do [the lengthening]. I just couldn’t comprehend that it was even going to be an issue.”
By 7 or 8, Caitlin was old enough to have her limbs lengthened — at a younger age, such surgery could stunt normal growth — but Jennifer, who was Caitlin’s primary caregiver after the divorce, was not prepared to make the decision on Caitlin’s behalf. Jennifer clung vehemently to her conviction that Caitlin didn’t need surgery. Even as a young child, Caitlin was a fiercely independent spirit, and Jennifer believed that they should let Caitlin reach a point where she could decide for herself. Stewart — and eventually Mike, who married Jennifer when Caitlin was 9 years old — supported Jennifer and remained informed but otherwise uninvolved in the decision-making process. Paley, meanwhile, didn’t push the surgery; he simply explained that lengthening was most successful when a patient’s bones were young and can heal more readily.
The social implications of Caitlin’s size became rapidly clear after her toddler years. Strangers addressed Caitlin as if she were half her age. The clothes and shoes that fit her were intended for a much younger child. Sometimes Caitlin’s friends excluded her from their play, telling her she was too small.
When Caitlin was 6, Jennifer and Stewart gave her a brand-new, bright-red tricycle for Christmas. She couldn’t reach the pedals.
“That was a rude awakening,” says Jennifer. Though Caitlin was ultimately content with jury-rigged wooden blocks that her grandfather duct-taped to the pedals, Jennifer remembers the moment as the dawning of a new realization.
“It was like, what about when she gets a big bike? What about when she drives a car? It started to become obvious to me what we were in for,” Jennifer recalls. “Even though I was very painfully aware of those things, I was very much against doing the bone-lengthening.”
——– (pg 3)
Jennifer blinks back tears. “She was my child, and I just could not imagine putting her through that.”
Caitlin was a tough, athletic kid who fell in love with soccer in third grade. Her short legs made it difficult to keep up with her peers on the field. By sixth or seventh grade, Caitlin’s size became more of an issue. Jennifer feared for her daughter’s safety. Caitlin’s teammates, Jennifer says, “were like monsters compared to her.” But Caitlin, who was unafraid of the larger kids, was determined to stay on the team. Impressed by her skills and determination, Caitlin’s teammates nicknamed her the “little bulldog.” There were other nicknames, too, ones that stung — even if they were intended to be affectionate, such as “Shorty.”
Caitlin’s feelings about limb-lengthening fluctuated throughout her childhood. Her parents scheduled informational appointments with Paley once every few years so that their daughter could gradually come to understand the surgical option. The technical explanations were left to the surgeons; Jennifer tried to remain neutral despite her own opposition to the procedure. She worried that Caitlin might choose the surgery because of social pressure and a desire to fit in, and stressed to Caitlin that she should focus on her own thoughts and feelings. Caitlin first began to seriously discuss her options with her family around age 10. Her own internal debate was exhausting, and she remembers the relief of finally making her decision.
“I was in school, and I was thinking about how I’d gone back and forth, and how I could probably do that for a long time,” she says. “I was also just thinking, you know, I don’t want to be this short forever.” Caitlin explains that her choice was shaped by years of careful thought and her cumulative childhood experiences as a dwarf. There is, however, one memory in particular that stands out for her.
It was midsummer, six years ago. Caitlin and her cousin Gabby had spent the day walking around the Six Flags St. Louis amusement park, playing games, shopping and avoiding the big roller coasters; Caitlin didn’t like heights, but she also knew that she wouldn’t be allowed to ride them even if she wanted to. She was too small.
Still, Caitlin was compelled by the water slide, despite the long line of people winding up a tall flight of stairs. The stairs were daunting to Caitlin — they looked narrow and rickety, and steps were a strain on her short legs, but the two began a slow, half-hour climb. When they finally got to the top, a man stepped forward to measure their heights. Caitlin felt a wave of anxiety and frustration; why hadn’t they measured at the bottom of the steps? The outcome was exactly what she had expected: Gabby was good to go, but Caitlin was too short. Caitlin told her cousin to go ahead without her. After all, they’d waited in line for a long time. Caitlin turned back, facing the long flight of wooden stairs, crammed with people.
“Excuse me,” she said, pushing through all the way back down. Excuse me. Excuse me. Excuse me.
Caitlin sits on the padded vinyl table, waiting. She fidgets, tugging the hem of her beige T-shirt and running her fingers through her hair. Her legs are spread in front of her, in shorts with snaps on each leg so they can fit over the pins and fixator frames.
The physical therapist should be here any minute now, in this room with the jungle mural painted across multicolored walls and smiling plastic stars dangling from the ceiling. Several large physical therapy tables line the walls, and a television plays a “Strawberry Shortcake” DVD.
Caitlin has spent nearly every weekday morning here at Sinai for the last five months, arriving with her mother by 7:45 a.m. after a 90-minute drive from Clinton. Caitlin’s recovery and therapy schedule is all-consuming; to accommodate it, Caitlin kept up with her schoolwork from home for the remainder of the spring semester, while Jennifer took unpaid family medical leave and recently decided to leave her job as director of operations at a Washington law firm. She’ll look for work again when Caitlin’s procedure is over, she says, “but for now, this is our life.”
This morning, there is a 4-year-old girl in a purple dress on the table beside Caitlin’s, here for her first day of physical therapy after surgery to correct a birth defect. The child’s eyes are riveted on the TV as the therapist lifts her left leg, encircled by a fixator frame and lined with metal pins screwed into her bones. The girl’s father holds her hand as the therapist gently starts to bend the girl’s knee.
———- (pg 4)
The child’s eyes fill with tears, and her chest begins to heave. “Ow, Daddy, ow,” she sobs, her wide eyes still fixed on the television with desperate intensity.
If Caitlin’s own pain isn’t enough to handle, there is always the agony of others to witness here, patients in different stages of the same excruciating process. Caitlin vividly recalls the misery of her own first therapy sessions.
“That was really bad,” Caitlin says, wincing at the memory. “They just pushed, and I was terrified to have my knees bent.” The pain often drives patients, children and adults alike, to scream in agony.
Caitlin didn’t make a sound, Jennifer remembers, “but tears just started pouring down her face. And tears were pouring down my face. That was absolutely a low point. That was when I realized what this was really going to be like.”
It’s been six weeks since Caitlin stopped lengthening. Her bones are healing, and she attends physical therapy only twice a week, instead of every day. She is hopeful that her bones have healed well, and she’s only about a month away from the final surgery to remove the devices on her legs. She’ll find out today at a clinic appointment with Paley.
“You’re so tough,” Grothe says, watching her carefully.
When the therapy session is over, Caitlin does her own “pin care,” carefully unwrapping the gauze around each pin site and cleaning the opening with a sterilized cotton swab. Jennifer helps Caitlin shower and dress, and then it’s time to head upstairs for a long afternoon in the clinic waiting room. Paley sees so many patients a day — and he is so frequently called into surgeries he often doesn’t see patients until three to six hours after their appointment time.
They are finally called at 4 p.m. for Caitlin’s 11:30 a.m. appointment. Paley arrives in the examination room 20 minutes later after reviewing X-rays of Caitlin’s legs. A soft-spoken middle-age man with striking blue eyes, Paley gets down to business immediately.
“The bone regeneration looks really good,” Paley says to Jennifer. “She’s solid.”
“Wow,” Jennifer says, visibly relieved. “Really?” Caitlin is grinning.
———— (pg 5, last)
Paley turns his attention to Caitlin and gestures toward her fixators. “You can have those off in September, whenever you can get on my schedule. You’re done,” he says. He adds that Caitlin probably won’t require titanium rods implanted in her femurs, a common precaution taken with many lengthening patients. Her bones appear to be strong enough on their own. Paley reminds them that Caitlin will again revert to a state of complete immobility for one month after the removal of the devices — no physical therapy, no weight-bearing movement whatsoever. This means that Caitlin will rely on her school’s staff for support when she starts eighth grade in a couple of weeks, and Jennifer will need to make a daily trip to school to assist Caitlin in the girls’ bathroom during the day. After that initial period, she will resume physical therapy three times a week.
After a five-hour wait, the appointment is over in five minutes.
But Caitlin doesn’t care about the lost afternoon; she’s elated. What she doesn’t want to dwell on right now is that in less than a year — if she were to follow a typical lengthening schedule — another surgery would affix new devices to her upper arms. The truth is, with the end of her first procedure finally in sight, Caitlin doesn’t know if she can go through it all over again.
***
In the early 1950s, at a small hospital in a remote region of western Siberia, a Russian orthopedist named Gavril Ilizarov developed a groundbreaking surgical technique to treat the badly fractured bones of injured Russian soldiers. The Ilizarov method of limb reconstruction is based on the idea that new bone growth can be stimulated by “distraction,” or pulling the ends of a broken bone apart, while stabilizing the limbs with an external frame. It is only within the last 20 years, however, that limb-lengthening has become available to symmetrically lengthen the arms and legs of patients with dwarfism. Though the procedure has become safer and more effective over time, it is not without its risks — such as infection, stiffening of the joints or muscles, and nerve damage. Because few, if any, patients have reached middle age or older, the possibilities for long-term problems from the surgery aren’t certain.
The doctor who performed Caitlin’s first surgery, Paley, was the first North American surgeon to study with Ilizarov. Paley, who was born in Israel and raised in Canada, brought limb-lengthening to the United States in the mid-1980s and put it into practice as chief of the pediatric orthopedic surgery residency program at University of Maryland Medical Center in Baltimore. Along with two other orthopedic surgeons, Paley co-founded the International Center for Limb Lengthening at Sinai Hospital in 2001. Roughly 100 dwarfs undergo limb-lengthening at Sinai every year.
Though bilateral lengthening can be performed on adults, for children with dwarfism, particularly achondroplasia — the most common form of dwarfism — the optimal time to begin lengthening is around age 8, Paley says. The legs are lengthened first, generally by about four inches. The bones must fully heal before the next surgery, which takes place around age 12 or 13, adding another five or six inches of length to the legs. One year later, the upper arms are generally lengthened by roughly three inches, to keep the patient’s overall stature proportional. Some patients opt for a third and final procedure to lengthen the legs again by an additional four to six inches, at age 15 or 16. Each procedure — which includes all surgeries and physical therapy — costs from $200,000 to $300,000, and the expense is largely covered by most insurance plans. The medical claims for Caitlin’s procedure totaled almost $300,000; her family paid about $9,000 out of pocket.
A height increase of up to 16 inches is, Paley says, “a tremendously life-altering functional improvement.” But not everyone views the additional height with the same sense of appreciation. As the number of dwarf patients seeking limb-lengthening has grown, so has the controversy surrounding the physical, emotional and social impact of the procedure. Many members of the dwarf community believe that limb-lengthening sends the wrong message: that in order to fit in, be professionally successful or simply lead a “normal” life, it is necessary to conform to the larger population’s standards of height.
This perspective is fueled in part by a painful history of exploitation and social isolation. The cultural identity of dwarfs has evolved significantly since the early 19th century, when “midgets” — considered a derogatory term — were primarily considered social outcasts, circus performers or curiosities for public display. But even now, with dwarfs living and working successfully throughout society, there are still lingering stereotypes and reminders of how dwarfism has been linked with degrading humor. Consider “Mini-Me” from the popular Austin Powers movies, “Wee Man” from MTV’s “Jackass,” or the practice of dwarf-tossing, wherein dwarfs dress in padded Velcro suits and helmets and allow themselves to be tossed in bars or clubs for laughs. A French dwarf named Manuel Wackenheim famously argued that dwarf-tossing is a personal choice and a legitimate source of income, but the United Nations’ human rights committee determined otherwise, supporting a French ban on the activity in 2002.
The official position of Little People of America, which has more than 5,000 members, has evolved along with the developments in the field of limb-lengthening over the last 15 years. Originally skeptical, on the grounds that the procedure was risky, experimental and potentially harmful, the current standpoint of the organization stresses that it is a matter of personal choice — but also notes that the surgery is generally performed for “adaptive” or “cosmetic” reasons.
“When we try to change our height, we are changing who we are in order to better navigate the social and physical barriers that we face,” says Gary Arnold, vice president of public relations for LPA. “But in my opinion, the answer is not to change our bodies. The answer is to impact the world in which we live.”
Arnold reiterates that prospective patients should be old enough to participate in, and fully understand, the complex decision-making process. But that position creates a logical dilemma. The procedure is ideally first performed on someone too young to give informed consent. How is this ethical collision resolved? In Caitlin’s case, it was resolved by tacit compromise; when she became a teenager, Caitlin made her own choice, informed by the 13 years she had lived as a dwarf. In many other cases, including that of Rachael Whitehead, a 14-year-old Canadian patient at Sinai with achondroplasia, the initial decision was made by someone else.
When Rachael walks into a room on crutches, it is difficult to picture her as a young woman with an original projected height of only four feet. After four rounds of surgeries, with three inches of length added to her upper arms and 15 inches added to her legs, Rachael now stands 5-foot-2 and is nearing the end of her final lengthening procedure.
Rachael’s mother, Esther Whitehead, decided to have Rachael go through the first surgery, adding four inches to her height, at age 7. Whitehead believed that after one round of lengthening, Rachael would know enough of the experience to determine whether she wanted to do it again.
Sitting with her daughter in the common room of the Hackerman-Patz House, a campus home-away-from-home for patients who travel long distances to have their limbs lengthened at Sinai, Whitehead says that after Rachael’s first surgery, she was still about the same height as an average male dwarf. As to whether she was certain that Rachael wanted the procedure as a child, Whitehead says firmly: “Children frequently change their minds. We felt this was the best option.”
When Rachael started asking questions about her height as a little girl, Whitehead took her to Little People of America gatherings, so she could begin to get a sense of what life might be like if she remained short-statured in adulthood.
“I wanted her to see that dwarfism isn’t cute forever,” Whitehead says.
Rachael chose to continue the surgeries. She wanted the added height, she says, because she believed it was the only way to live a normal life. Without surgery, she says, “your adulthood would be ruined, and that’s a lot longer than your childhood. This way, you can live your life and not be stared at.”
***
The living room is filled with brightly colored streamers and balloons, and a pink cake box sits on the counter in the kitchen. Caitlin, who is celebrating her 14th birthday today, is dressed in a striped shirt, sparkling black headband and a loose cotton skirt. She is only two weeks away from the surgery to remove her fixators. She remains vague about whether she plans to continue lengthening — arms or legs — but the possibility seems increasingly doubtful as she nears the final stage of her first procedure.
When the first cars appear at the crest of the hill and wind down the long driveway, Caitlin — who can now stand and walk for brief periods using a walker — rises to greet her guests outside. Caitlin’s movements are jerky, her stance forced unnaturally wide by the devices anchored inside each lower leg.
“You okay, Cait?” Jennifer asks quietly, opening the door for her daughter.
“I’m fine,” Caitlin replies sharply, and she stiffly quickens her pace.
“Okay,” Jennifer sighs. “I won’t be the helicopter mother.”
Still, as she talks with other parents, Jennifer keeps her eyes trained on her daughter. While they wait for the rest of the girls to arrive, Caitlin and four of her friends gather in a circle at the foot of the driveway, kicking a soccer ball and giggling about boys, cellphones, beauty products. Caitlin looks her age beside these girls, who are also 13 or 14 but appear older, dressed in baby tees and fitted jeans with cellphones and lip gloss tubes bulging in the back pockets. They pass the ball to Caitlin almost every other turn — gentle kicks that Caitlin can catch against the toe of her shoe. One of the girls accidentally sends the ball rolling into Caitlin’s walker.
“Oh, my God, I’m so sorry,” she exclaims.
“It’s okay,” Caitlin says, blushing slightly. She plants her arms on her walker and lifts her feet off the ground to nudge the ball back into the circle. Behind her, Jennifer winces, but she doesn’t intervene.
A half-hour later, while the party waits for Caitlin’s stepfather, Mike, and her brother, Jackson, to arrive with pizza, Jennifer sets up Dance Dance Revolution — a Wii video game with interactive floor mats that allow players to move along to the dance instructions on the screen. Caitlin supervises from her seat on the edge of her bed.
“I can try it,” she says suddenly, assertively. It’s a sensitive subject, as Jennifer made it clear before the party that Caitlin would not be allowed to play the game — the mats are slick plastic, and a fall could be disastrous.
Jennifer turns to her. “No, you can’t, Caitlin,” she says. “We didn’t go through six months of this for you to slip and fall.”
The two look at each other steadily for a moment. Jennifer exhales through pursed lips. “Look, let someone else go first, and we’ll see how slippery it is,” she finally allows.
Caitlin holds the game’s remote control as two of her friends stand up to play the first round. Through the screen door, one more car appears at the top of the driveway — the last party straggler — and Jennifer steps outside to greet the new arrival. Caitlin waits for the screen door to slam shut behind her mother.
“Hey, I can do it now!” she says. She stands and moves to one of the mats. Holding tightly to her walker, she starts a new game and begins to move her feet in rhythm on the mat. Her friends smile nervously, but the interlude doesn’t last. Outside, the car pulls away, and the screen door opens again. Jennifer stands in the entrance, her eyes wide when she sees Caitlin on the mat.
“Caitlin!” Jennifer shouts, but her expression quickly softens as she watches her daughter move with careful deliberation to keep pace with the game.
“I won’t slip; I’ve got my walker,” Caitlin tells her. Jennifer relents, and Caitlin does one more round with her friends. When the game ends, she sits back down on the edge of the bed.
On the couch, a handful of her friends are discussing the actor Orlando Bloom while they examine each other’s cellphones. Two other teens are giggling on the mats as they follow along with the game. Amid the flurry of activity, Caitlin seems alone for a moment, lost in the images on the screen. Her fingers tap against the handles of her walker, and her feet move slightly to the front, to the side, back again, as she mimics the movement of her dancing friends.
***
In the pre-op area at Sinai, Caitlin sits in a hospital bed, drumming her fingers against the mattress. It’s the day she has been waiting for, and she is both excited and nervous. Wearing a T-shirt printed with the famous refrain from Dr. Seuss’s “Horton Hears a Who” — “A person’s a person, no matter how small” — Caitlin is flanked by her parents as a middle-age nurse reviews her chart.
“Any loose teeth or contact lenses?” the nurse asks. Caitlin says no.
“What about body piercings?” asks the nurse.
Caitlin squints and tilts her head, smiling mischievously.
Jennifer cries, “She’s kidding!”
Stewart’s gaze is locked on the pins protruding from his daughter’s legs. “She has 24 body piercings,” he says, wryly.
Shortly before 8 a.m., Caitlin is wheeled into the large, state-of-the-art operating room, designed to accommodate limb-lengthening and reconstruction surgeries. X-rays of Caitlin’s legs are mounted on one wall. A narrow table draped in blue cloth displays rows of meticulously arranged, gleaming surgical instruments. A nurse positions a mask over Caitlin’s nose and leans down slightly, near Caitlin’s ear. “It’s a dream,” she says softly. “When you wake up, you’ll be a new woman.”
Caitlin’s eyes flutter and close, and Jennifer is escorted from the room. Shawn Standard, who will be leading the surgery this time, takes his place at Caitlin’s side. Another doctor stands across the table, and both begin to unscrew the fixator frames. The clunky black devices are removed easily, and soon only the 24 metal pins are left protruding from Caitlin’s legs.
“It takes hours to put these things on,” Standard says of the pins and frames, “and it takes about 15 minutes to take them off.”
One by one, the pins are unscrewed and pulled free of Caitlin’s thighs and calves, clinking as they are dropped into a bucket on the table. By 9 a.m., less than half an hour after Standard entered the room, all of the pins are out.
Outside the OR, two hours pass before Stewart and Jennifer receive an update on Caitlin’s progress. The news is mixed: Despite Paley’s earlier prediction, Standard has decided to err on the side of caution and place titanium rods in both of Caitlin’s femurs, to stabilize the bones and help maintain alignment in the event of a fall or fracture. Jennifer rubs her temple. “Caitlin’s not going to be happy,” she says. This also means another surgery, as the rods are generally removed within six months to a year.
The two settle into chairs in the waiting room and talk about the years of deliberations that led Caitlin to surgery.
“When she decided,” Stewart says, “I said that it would be the end of her childhood.”
“I think her childhood ended a couple years ago,” Jennifer counters, “when she started to really realize and face the fact that she was different.”
Standard emerges from the OR to speak with Jennifer and Stewart at 12:30 p.m. “She did really well,” he says immediately. He adds that if Caitlin has her arms lengthened in the spring, he’d plan to remove the rods in her legs at the same time.
After Standard leaves, Stewart looks at Jennifer. “So the rods will come out when she does her arms,” he says. Jennifer shakes her head. Though Caitlin has not definitely decided, and she still has another couple of months before she would need to schedule a surgery for the upcoming spring, Jennifer says that right now, Caitlin doesn’t think she’s going to have more surgery.
This development comes as a surprise to Stewart. “I thought that was a done deal,” he says.
Jennifer leans back in her chair. “Caitlin can function with her arms. For Caitlin, she just wants to be able to function.”
“Yeah,” Stewart adds, “but she also wants to be as close to normal as possible.” He pauses. “Well, it’s her decision.”
“It always has been,” Jennifer says.
***
Caitlin didn’t know any other dwarfs as a child. All of her friends and family members were average height, and Caitlin never participated in meetings or activities within the dwarf population — something that both she and Jennifer view with a tinge of regret. Before she met other patients like herself at Sinai, Caitlin’s sole connection to little people was through movies and TV. She has developed a sense of the dwarf community by watching The Learning Channel’s “Little People, Big World,” a reality show that follows a family of both little and average-height individuals.
Dahlia Kronish, a 30-year-old ordained rabbi and high school teacher, lives that reality. Kronish — like Caitlin — is the only dwarf in her family. And like Caitlin, Kronish was presented with the option of pursuing limb-lengthening when she was a teenager. But Kronish had grown up with a strong connection to the dwarf community, through Little People of America and through a similar organization that her parents founded after the family moved to Jerusalem, when Kronish was 18 months old.
Nestled on a sofa in her New York City apartment last February, Kronish explains that she was 16 when she first met with a surgeon in Israel who described the lengthening procedure, still in an early stage of development. When the surgeon detailed how they would break and drill pins into Kronish’s bones, her mother fainted.
Kronish saw another surgeon a year later before telling her parents that she didn’t want to have her limbs lengthened. Her family, she says, supported her choice.
“I had learned to cope with being stared at and receiving different treatment,” she says. “Even if I wished — which I often did and still sometimes do — that it would have been better or easier if I wasn’t this way, I still wasn’t interested in a whole new identity at age 16.”
Kronish’s cheerful apartment on the Upper West Side is a testament to the identity she chose to embrace. There are stepstools in the kitchen so that she can reach her countertops and sink. The shelves above the counter are bare or sparsely occupied by items she seldom uses; dishes are stored in a low cabinet. A bookshelf in the living room displays a framed photo of Kronish laughing with her fiance, Josh Maudlin, who is also a dwarf. She avoids the subway, where the crowds are overwhelming and the steps are an exhausting strain. Instead, she drives a car with removable extensions to reach the pedals and pillows to push her forward in the seat so her hands can grasp the steering wheel.
Kronish, who served as president of the New York City LPA chapter for a year, has been thinking about how she’ll share a dance with her father at her wedding in June. She’s considering options — perhaps a raised platform she could stand on — but worries about looking awkward.
Kronish teaches rabbinical studies to students in ninth, 10th, and 12th grades at the Abraham Joshua Heschel School on the Upper West Side, and each year, she offers her students an opportunity to comment frankly about her height. She tells them about her choice not to pursue limb-lengthening and answers their questions.
This time, when she asks five of her high school seniors to share their thoughts about the impact of her size in the classroom, the students immediately recall a painful moment from the beginning of the 2007 school year.
Faculty and students gathered on the first day of school in September for a “welcome back” breakfast. To help spur excitement for the new academic year, the school hired a standup comedy troupe. For one skit, the troupe invited two students to join them before the group; the comedians would perform a scene and then pause, asking the students to suggest a word or phrase that they would then incorporate into the act. When the comedians turned to one of the two students, a senior known for his good-natured sense of humor, the student blurted out the phrase “midget-tossing.”
The room of 250 students and 50 faculty members grew very quiet, but the comedians promptly let loose with a string of jokes about “midget-tossing.” The student, realizing his own blunder, tried unsuccessfully to change his suggestion. After a few moments, Kronish stood up and walked out of the auditorium.
“I couldn’t handle it,” Kronish says later. “I was tearing up.” She refused to cry in front of her students.
The school principal, mortified, followed Kronish into the hallway along with two other faculty members. A few moments passed before Kronish composed herself and returned to the room to lead the gathering in the after-breakfast prayer.
“That was the hardest thing I’ve ever done,” she says.
When the class is dismissed, Kronish stands and follows her students out into the busy hallway, making her way to a teacher’s meeting. In the classroom, pasted above the blackboard, is a printed quote by author and Buddhist teacher Sylvia Boorstein:
“There are only two possible responses to every challenge — balanced acceptance or embittered resistance. Acceptance is freedom. Resistance is suffering. We all know this.”
***
In the food court of Bowie Town Center, Jennifer zips Jackson’s backpack and eyes her daughter, reminding Caitlin of the objective of today’s shopping trip: “You need pants.” Caitlin, armed with a small roll of cash tucked in a bright pink wallet, is eager to part ways and head off in search of her long-awaited new jeans. She’s been pining for real pants for months.
Stepping outside into the cold, overcast afternoon, onto the busy sidewalks of the outdoor mall, Caitlin immediately heads toward the stores on the other side of the street. It’s been two months since the surgery to remove her fixators and over a month since she stopped using a wheelchair, and her gait is somewhat stiff. She has physical therapy three times a week, which is still painful and exhausting. But now she is beginning to appreciate the results. “I’m not the shortest kid in my class anymore!” she announces. Time has begun to soften the hard reality of what she went through, and she’s not as quick to say that a second procedure is out of the question.
The first store on Caitlin’s list is Wet Seal, a prime destination for teenage girls. She opens the door to a blast of heat and punk rock music. The walls of the store are covered to the ceiling in tees with brightly colored sequins and sassy messages: “My Boyfriend Is Cuter Than Yours,” “I Don’t Like Your Girlfriend” and “Love, Peace and Party.” Caitlin heads toward several long shelves of jeans.
She’s not sure what size she is — she’s gotten taller and lost weight over the last eight months — so she grabs several pair, ranging from size 0 to size 3 (all designated “short”). On the way to the dressing room, she passes a rack of boots and shoes. She pauses in front of a pair of black, lacy, open-toed shoes with a skinny three-inch heel. “These are so cute,” she says.
In the dressing room, the size 0 turns out to be a bit too snug, and the flared bottom of the pant almost covers her entire foot; the 5 inches she’s gained since March make a big difference, but the pants are still slightly long. Caitlin changes into a pair of black jeans — size 1 short — and opens the door with a euphoric grin.
“They fit!” she declares, running her hands down the outside of her thighs, over the places where rows of metal pins jutted from her flesh two short months earlier. “I know my size!” she says and studies her reflection in the dressing room mirror. “I have a size.”
***
This past summer brought a chance for a new beginning: Caitlin’s family bought their first home and moved to a shaded neighborhood in Alexandria. It’s a big change from the sprawling fields surrounding their rented house in Clinton, and a shorter commute for Jennifer, who is working long hours again as managing director of office services at the law firm Hogan & Hartson in Washington. Early into her freshman year at a new high school, Caitlin is still adjusting to the routine and making friends. She’s glad that she didn’t undergo surgery in the spring, which would have meant starting high school with fixators on her arms. So far, only one classmate has asked about the scars running along her thighs and calves. Caitlin said they were from a car accident.
“A lot of people don’t really understand,” Caitlin says. “I’m just so afraid that people might think that it’s a plastic surgery and wonder why I went through that just to be taller. I really don’t want people to think that about me.”
It’s an irony that is not lost on Jennifer. The skeptic who feared that Caitlin would choose to have surgery because of social pressure, Jennifer now worries that Caitlin may delay or decline it for the same reason.
At a follow-up appointment a few months ago, Paley urged Caitlin to consider additional lengthening, reminding her that the procedure would be most successful while she is young. But for now, she has no plans to go through the process again. It’s an uncommon choice, he says, so uncommon that Paley has little doubt that Caitlin will change her mind.
“She needs to get her normal life back, and then . . . she will decide to do it again,” Paley says. “They all do. The number of patients who have not gone through a second lengthening is very, very few.” With the pain of the process behind them, Paley contends, patients quickly come to value the end result and usually decide that it’s worth the temporary sacrifice.
But surgery, Caitlin realizes, didn’t change everything; it didn’t “fix” the fact that she feels different among her peers. She still sometimes finds herself on the sidelines among her friends, and she can’t always relate to their interests and priorities. Her experience — growing up with a unique set of social challenges and limitations, and her decision to test her emotional, physical and psychological limits to gain the functionality she wanted — has given her a sense of perspective beyond her years.
“My personality is different,” she says. “I don’t like drama; I don’t like talking about people. I don’t fit in that way.”
***
Since the family moved to their new neighborhood, filled with kids and bike trails, Caitlin’s stepfather had been determined to buy Caitlin a new bicycle. She didn’t want one. She tried riding a friend’s bike a few months ago, she told her parents, and it didn’t work out; after a few shaky attempts to pedal a bike that was too big for her, she gave up. Still, Mike was insistent: new start, new bike.
So a week before her 15th birthday, on a stormy afternoon, Caitlin and her family drove to Toys R Us. Caitlin was not thrilled about where they were shopping, even though the store had a larger selection of bikes with 24-inch tires; she thought most of them were ugly, with childish colors. She wore her sunglasses inside. Embarrassed and eager to leave as soon as possible, she chose a dark purple bicycle.
Mike assembled the bike at home as the storm outside began to quiet. When the rain finally stopped, Caitlin decided to give it a try. She stood on her toes and climbed onto the seat. It fit her perfectly.
In the beginning, she concentrated hard on maintaining her balance, pushing the pedals awkwardly as the bike wobbled across the wet pavement. But soon the movement felt like second nature; she stopped concentrating and began to simply ride. She picked up speed, circling back to pass her mother, who stood watching. The look on Caitlin’s face, Jennifer says, was profound happiness and relief.
Caitlin kept going, clutching the handlebars and pedaling furiously. Jennifer watched her go faster and faster, rounding the bend in the street and disappearing from her view.
Caitlin Gibson, legal administrator for The Post, is a writer who lives in Bethesda. She can be reached at gibsonc@washpost.com.
