Step by surgical step, a life is transformed
When the nurses wheeled Ana Rodarte into the operating room at Scripps Memorial Hospital in La Jolla, she was already dopey from the sedative she’d been given in pre-op.
A heart monitor began to capture her drowsy rhythms. The anesthesiologist covered her mouth with a ventilator, and as she breathed in a mixture of oxygen, nitrogen and anesthetic, the world disappeared.
In the long hallway outside, Munish Batra washed up. He had stayed up late the night before downloading music onto his iPod -- Led Zeppelin, Nelly, Thievery Corporation, DJ Shadow and some Punjabi tracks. He called his selection the Rodarte mix.
Gloved and gowned, he began by washing Ana’s face with a mild antiseptic. His gentle touch, tracing the extravagant folds of her brow, cheek and chin, had a ritualistic quality. The purple dotted lines he had made on her face in pre-op bled under the wash.
Fellow surgeon Michael Halls began a series of shallow injections of lidocaine, a numbing agent, and epinephrine, to minimize bleeding. Batra started by cutting into the skin along her forehead, cauterizing the blood vessels along the way.
Batra and Halls had founded a nonprofit to provide surgical procedures for people in need. They called it DOCS -- Doctors Offering Charitable Services -- and their team had repaired cleft lips and palates, reattached torn limbs and helped victims of domestic violence and those with birth defects and rare genetic disorders.
Then there was Ana.
Batra had first seen her six months earlier. She was the last patient at the end of a busy day -- the usual consultations for a plastic surgeon, tummy tucks, breast augs and face lifts -- and when he walked into the examination room, he realized what a rare case she was, perhaps his greatest challenge as a surgeon.
Before committing, though, he’d made a couple of calls.
“I’d avoid it,” said one colleague.
“Why?”
“As soon as you start cutting, you’re in for significant blood loss. And beyond that, you really have to wonder how much improvement you’ll ever see.”
Halls was more optimistic. He had treated similar deformities before, and as he considered the case and the sophisticated techniques he and Batra could use, he grew confident that they could help.
“Let’s just do it,” he said.
Batra turned to the textbooks in his office. He wanted to brush up on neurofibromatosis, the source of Ana’s disfigurement, and the first sentence of one chapter caught his attention:
“We cannot overemphasize that NF cannot be cured surgically. This, however, does not imply that any degree of timidity is required of the surgeon.”
--
Most of us will never know how the world sees us. Ana always will. Most of us assume the world accepts us for who we are. Ana can’t. She knows the blatant stare, the averted glance, the pointing-out. She knows the pity, the presumptions and exaggerated concern.
She doesn’t like the attention, and she doesn’t completely understand it. Over the years, shyness has become her primary defense, the only power she can exert over circumstances beyond her control.
When I met Ana, I made the association to Joseph Merrick, the famed Elephant Man, whose appearance, notably captured in the 1980 movie by David Lynch, was similar to hers. I assumed that like Merrick, Ana had found the terms of her life defined by disfigurement, in her case the result of a genetic condition affecting the protein that regulates cell division.
But Ana was quick to disabuse me of any assumptions I might make because of her appearance.
“just because i don’t look like everyone else doesn’t make me less normal,” she wrote.
I soon realized how right she was. Through e-mails and visits to her home in Riverside County, I discovered a young woman who was no different from anyone else her age. She liked to party and shop at the mall and was especially proud to have gotten a bargain on a flat-screen TV for her parents after waiting since 4 a.m. the day after Thanksgiving for Sears to open.
She may have been shy, but she was confident that her life was like anyone else’s, and she refused to see her appearance as a limitation. So I had to wonder why she had agreed to a series of complicated and risky reconstructive surgeries.
“i don’t even know why im having the surgeries just yet, haven’t figured that part yet, i know i won’t be ‘normal’ ever . . . whatever the heck normal is. . . . “
Long frustrated by the perceptions of others, Merrick found solace in the words of the English hymn writer Isaac Watts:
‘Tis true my form is something odd,
But blaming me is blaming God. . . .
If I could reach from pole to pole,
Or grasp the ocean with a span,
I would be measured by the soul,
The mind’s the standard of the man.
Is it possible to measure the soul without considering the body? We are identified by our appearance -- our stature, our gait, our mannerisms -- and above all by our faces.
The symmetry of eyes, ears, nose and mouth, the arrangement of hair and the line of the jaw help convey critical information, such as age, sex, ethnicity and emotion. They also give rise to assumptions about kindliness, stupidity or even malice that, right or wrong, establish our initial understanding of one another.
Throughout her life, Ana has had to face these assumptions -- the child who cried in fright upon seeing her, the strangers who hugged and blessed her -- and she has had to adapt to the isolation and helplessness they created.
She may have felt normal, but normal isn’t something we decide upon ourselves. Normal is acceptable, and acceptable is in the eye of the beholder.
Now, with the help of Batra and Halls, she hoped to accommodate this equation and find an appearance that the world could gaze on more easily.
As painful and as risky as the surgeries would be, I wondered if they were easier for Ana than hoping that the world might change.
--
“Can you turn the coag up?” Batra asked. Ana was bleeding more than he wanted.
“Go to 35,” Halls said, and then, “Go to 40.”
Smoke rose into the bright lights hanging above them. The air smelled of burning flesh. Batra and Halls alternated between cutting and suctioning, moving forward and stopping to assess their progress against the steady bleeding.
As a child, Ana had undergone a series of operations at Loma Linda University Medical Center that had brought no lasting improvement. Treating neurofibromatosis is like trying to stop time. As long as the affected cells continue to divide, the tumors continue their uncontrolled growth.
Batra and Halls, however, believed that they might have better luck than the previous surgeons, especially if the cells were dividing at a slower rate than when Ana was younger. Unlike other physicians who have treated comparable cases with one marathon surgical session, they wanted to proceed slowly and sequentially.
They planned up to five surgeries, each with the intent of restoring the landmarks of her face, and today, April 1, 2006, they intended to reposition the brow, the cheek and the jaw by eliminating as much tumor as possible and by reattaching the underlying soft tissue to the bone.
Batra recognized how radical and transformative each operation would be, and he believed that if he mapped out small, incremental steps, Ana would be more tolerant of the pain and more encouraged by the progress. He wanted to make sure they reached the final destination together.
The journey he proposed reminded him of “Life of Pi,” a novel by the Canadian writer Yann Martel, in which an Indian boy is stranded in a lifeboat in the middle of the Pacific Ocean for 227 days with a 450-pound Bengal tiger.
Each cut was an encounter with forces more volatile than anything he could prepare for, and he knew that if everything worked out, he and Ana would be in this boat together for a long time.
With a 2-inch flap of skin removed from her forehead and the skull exposed, Batra drilled into the bone and set a number of small metal anchors, to which the surgeons sutured the soft tissue of Ana’s left eyebrow, elevating it nearly two inches.
Their hands were a symphony of motion. They thought of themselves as Michelangelo shaping his marble and as furniture upholsterers, draping and cutting and stitching. By 11 a.m., three hours after starting, Batra had begun to talk about sushi for lunch. Weezer kicked in on the Rodarte mix.
At 12:10 p.m., an inventory of equipment was taken to make sure that nothing had been left behind, and the anesthetic was discontinued. The increase of carbon dioxide in Ana’s lungs triggered her breathing reflex, and she was ready for post-op.
In the empty space of the waiting room, Ana’s parents, Ismael and Margarita, sat with her Aunt Teresa and Fran Vigil, the family friend who had contacted Batra seven months earlier to see if he could help. On a table between them were the husks from an empty bag of sunflower seeds.
The doctors briefed the family and invited them back to recovery. Margarita kissed her daughter’s bandaged face. When Ana awoke, she asked for an ice chip. Ismael wiped a tear from his eye.
--
Ana liked Batra. She thought he was cute.
Like her, he had come to America from somewhere else. In his case, it was a small village in northern India where electricity and running water were scarce. Baboons played on the roof of his home, and reinforced basements served as bomb shelters whenever Pakistani jets flew overhead.
His father, who earned $200 a month as a chemist in New Delhi, came to this country in 1970 and found work in a smelting and refining factory in Cleveland. Two years later he sent for his wife, their oldest son, their daughter and Munish. Their home was in a tough part of the city. At 14, Munish had the Sanskrit syllable om tattooed on his left arm.
As a sophomore in high school, Batra worked in a steel mill. After graduation, his father conspired with the foreman to have him laid off, spurring him to follow his brother to Ohio State University. He studied English, favoring Longfellow and Vonnegut, and dreamed of becoming a writer.
Eventually he decided that medicine would be more practical and enrolled at Case Western Reserve School of Medicine in Cleveland. In 1996, he moved to Southern California and brought his parents and his younger sister with him. He was 30.
By the time he met Ana almost 10 years later, he had finished a residency in plastic surgery, completed a yearlong fellowship in craniofacial surgery, opened a private practice in Del Mar and joined the medical staff at Scripps Memorial Hospital.
He spoke to Ana in a way that no other doctor had. The medical terms washed over her, but his casual manner, his easy slouch, his youth and confidence made up for what she didn’t understand, and she liked that he asked what she thought.
It helped, too, that she noticed a change. Once the swelling from the first surgery had subsided, she could see that her forehead was less creased, her brow less sunken. She could see her left eye, and her cheek followed more closely the outline of her jaw.
Two months later, when an invitation arrived for “Midspring Night’s Dream,” a benefit for Batra and Hall’s nonprofit, she knew she wanted to attend.
Of course she was nervous. During the surgery, some of her hair had been shaved off, and she wasn’t certain how she’d style it. But she wanted to go out, and Fran offered to drive.
The benefit was held at the Marriott Del Mar in San Diego. The surgeons’ clients, wearing formal low-cut dresses with ample decolletage, crowded the small room. Glittery jewelry, perfect eyebrow lines, tinted hair and highlighted cheeks accentuated the doctors’ work, and as the women sipped champagne, chatted and made bids on Botox treatments and skin care products, beauty and fragility never seemed more inseparable.
Ana stepped into the room, wearing a brown pin-stripe skirt with a spaghetti-strap shell. Her hair was tied back, her toenails painted black. She looked stunning, and when Batra spoke later that evening, she did not mind being singled out.
--
The summer heat came early that year, and Ana tried to put aside thoughts of the second surgery. The prospect of returning to the hospital always made her worry. At night, just before falling asleep, she would startle herself awake with the memory of needles and IV lines.
She tried to distract herself. She got a new dog, a Chihuahua she named Charlie. Her application for Social Security disability benefits was approved, giving her a monthly income. She bought a new cellphone. She and her mother got tattoos. Hers was a scorpion, her astrological sign, inked just below her neck. Margarita’s was the letter A on her right shoulder, with a teardrop falling beneath it.
Batra wanted the next procedure to take place by midsummer, but it wasn’t until September 2006 that Ana was wheeled back into the Scripps operating room.
The plan was to remove at least 12 teeth that were abscessed or impacted because of the tumors and were a risk for infection. They also wanted to reshape Ana’s nose.
The first cuts were the easiest but, as always, out of the corner of his eye, Batra caught sight of Pi’s tiger restlessly casting about.
Andrew Chang, the oral surgeon on the team, was optimistic. The bone was strong, good for implants at some later date. He worked quickly and efficiently.
When he was done, Batra and Halls got started, occasionally interrupting chitchat about patients and the latest surgical gadgets to talk through the next step. Everything was a reflex, a seemingly thoughtless association between brain and hand that directed their rearrangement of Ana’s face.
Then Batra hit a large sinus of blood vessels by the left eye. The tiger lifted its head and moved toward him.
“Give me another suction tip. The suction tip is blocked.”
There was never any way of knowing how thoroughly the blood vessels had infiltrated the tumors, and there was no way of knowing how the body would react to this bleeding.
Batra put his finger and some gauze on the vessels to try to slow the flow, shaking his head with sudden frustration. Forceps slid onto the floor. The boat was starting to rock, but Ana’s vitals remained strong. He kept the pressure on the bleeder, and soon the cat lay down.
Batra made another incision from her left nostril to the bridge of the nose. Deep beneath the skin, he and Halls identified the pyriform aperture, the bone beneath the nose where they would establish an anchor to help create the groove between cheek and nose.
“Ready for anchors,” Batra finally said.
The nurses scrambled to find the right ones.
“This one looks like it’s for a femur,” he said. The anchor was too large for the small bones of her face.
A trickle of blood ran down Ana’s cheek. With portions of the skin unmoored from the muscle, her face looked like a latex mask.
Eventually, the right-sized anchors were found, and with connections established in three places along the left side of Ana’s nose, Batra and Halls began to advance the cheek muscle and the skin toward the middle of her face to create more of a contour to her nose.
Now and again, they paused to make a slight realignment. Batra sighed and craned his neck back.
“Looks like I’m not going to make it to my jujitsu class today,” he said.
By noon, the doctors had begun cutting off the overlapping skin, and by 1 p.m., almost five hours after they started, they were bandaging Ana’s head.
“Ana will see a big change,” Batra said. “We just need to get through the swelling and the pain.”
--
Ana felt no pain on the night of her October birthday. Sitting in her backyard -- a string of tiki lights glowing orange and yellow above her and plates of limes, cabbage, radishes, tortillas and onions and steaming bowls of posole before her and her guests -- she was beginning to act a little goofy.
Dressed in a white hoodie with brown culottes, her hair tied back, she had been sampling everyone’s rum and Coke, making sure the proportions were right. The dogs were running around, and her cousin Lalo was setting up his boom box.
A little more than a month earlier, she had been in surgery, and afterward, she was certain that they had gone too far. Her head hurt. Her mouth was sore. She couldn’t go outside. She didn’t dare look in a mirror, and she had developed an allergic reaction to the painkiller Vicodin.
“How would you feel if you were in my shoes?” she snapped in an e-mail.
Then one day, she discovered the chicken nuggets at Wendy’s, and as the swelling went down, she could see the bridge of her nose and a flare to her left nostril.
She had been excited about her birthday, but the plans had been touch-and-go. She wanted to head off to the Morongo Casino, just as she had the previous weekend, but wildfires in the nearby mountains changed everything.
Surrounded by family and a circle of balloons, Ana opened her presents: a CD drive and discs, shampoo for her dog and a gift certificate to the Goth mart in the local mall.
More guests arrived, and the party picked up. Lalo cued up Los Baron De Apodaca, and Ismael and Margarita started to dance. Ana and her cousins were doing Bacardi shots and drinking Parrot Bay coconut rum. She took some calls on her cellphone. There was talk about making a trip to Vegas in January.
Soon the patio was alive with the rhythm of the music, arms overhead beneath the dark night and the stars, the mixing sounds of music and laughter. As a cool wind blew off the San Jacinto Mountains, it carried with it a trace of ash.
--
Rising at 5 each morning, Batra would light jasmine and sandalwood incense and sit before a small niche in his bedroom where he kept a statue of Ganesha, the Hindu elephant god, remover of obstacles. The one obstacle that seemed immovable was Ana’s reticence and reserve.
More than technique, plastic surgery is a relationship, one that Batra works hard to develop. When his cellphone rings with the opening chords of Led Zeppelin’s “Kashmir,” he knows it could just as likely be a patient as the office or a friend. He would have it no other way.
Years ago, when he was chief trauma resident at St. Luke’s Medical Center in Cleveland, an 18-year-old was brought to the hospital, brain dead from a gunshot wound to the head. When the family agreed to allow his organs to be harvested, the head surgeon turned to his colleague.
“Well, Dr. Batra, this is going to be a long night,” he said. “When we are done, he is going to be a canoe.”
Batra knew how surgeons deal with the stresses of their careers by distancing themselves from their patients, making light of death, morbidity and deformity, and how plastic surgeons often fall prey to professional narcissism.
Striking a balance between emotion and objectivity isn’t easy, especially in matters as sensitive as appearance, and in Ana’s case, he found it nearly impossible. He felt sympathy for her. He found himself hoping that by changing her appearance, he could change her life, and one day she would find a job, walk down the street without drawing stares, meet someone who could love her.
When he asked Halls if he thought they were making a difference in her life, Halls told him it didn’t matter. The only thing that mattered was whether they were doing their jobs as surgeons. You cannot change the nature of a tiger, he said.
Batra was accustomed to patients who appreciated his work, and he had hoped for the same reaction from Ana. He had a difficult time reading her one-word answers and seeming indifference.
But how could a few hours under a surgeon’s blade undo a lifetime of experience?
Neurofibromatosis had determined the course of Ana’s life, and there could be no underestimating the stigma she felt living with the disorder, even if she denied it. The tumors had been a mask, locking her inside herself, and even as they slowly disappeared, unlearning that mask would take time.
--
Spring blurred into summer. Ana couldn’t stop worrying about the next operation. Long weekends in San Diego with a girlfriend and carne asada barbecues on Fiesta Island helped. Phone calls with a boyfriend she’d met on the Internet distracted her. There was a friend’s quinceanera in September, and on the occasional Saturday or Sunday when it got really hot, she went fishing.
A local lake was as good a getaway as any. Edged by a few eucalyptus trees, the open water drew an afternoon breeze, just enough to take the edge off 100-degree temperatures.
In the shade, Ismael enjoyed a beer. Margarita read astrology magazines. Family stopped by. They grilled corn, served napoles and made soft tacos with beef, white onion, tomatoes and cilantro. Sometimes they caught a catfish, and there was even cell service.
“Como se curo,” her aunt said of Ana. She is cured.
As the lavender twilight spilled over the lake, cottonwood tufts drifting across the sky, barbecue lifting into the air, the fluorescent corridors and antiseptic smells of Scripps seemed far away, and Ana let herself relax, seemingly content for an afternoon of forgetfulness, even as Batra and Halls began to recast their plan for the third surgery.
They had been concerned about Ana’s recurring headaches, caused by her double vision and the misalignment of her eyes. Initially they had planned to cut and shift the facial bones around her nose and forehead to elevate the orbit of her left eye, but they realized it didn’t need to be that complicated.
They presented their opinion to the other doctors at a dinner meeting at Ruth’s Chris Steakhouse in Del Mar. Over calamari and shrimp appetizers, they opened a laptop and studied Ana’s CT scans.
“It’s a volume problem, excess volume in the orbit,” Batra said.
The tumors hadn’t misaligned the orbit; they had expanded it, allowing the left eye to settle lower than the right.
“You’re going to have to decrease the mass of the orbit,” said Don Kikkawa, the team’s eye surgeon. “The main issue is that her eye is sitting about a centimeter down. You support that by a bone graft.”
“So you’re going to take a cranial graft?” asked Halls.
“Yes.”
As the conversation drifted from surgeries to Michael Moore’s “Sicko,” the doctors’ main courses arrived.
--
By now, the Scripps OR was a familiar place for Ana, even as she dozed under the warming blankets and sedatives. The bright lights overhead were like starry planets.
She and Fran had driven down the day before. She had stayed up late watching as many “Friday the 13th” movies as she could, making it through the fourth installment. She was tired.
In the car, she and Fran talked about the surgery. Ana just wanted it to be over.
“There’re lots of things I don’t like,” said Fran, who had recently been diagnosed with colon cancer. “I’ve even thought of quitting my chemo.”
“If you quit,” Ana said, “then I’ll quit my surgeries for sure.”
“Then I guess we’ll just have to continue,” Fran said.
Batra finished washing her face with Betadine. Halls began injecting lidocaine and epinephrine, and the tiger started to twitch its tail.
As Kikkawa began exposing the lower part of the left eye socket, Batra gently lifted back the scalp and identified a site, about four inches above Ana’s left ear, where he would harvest bone for the graft. He marked it with a purple pen and started to trace the outline with a small pencil-like saw with a diamond tip. Its high-pitched whine sounded like a drill in a dental office.
The cranium comprises two layers of bone, the outer table and the inner table, separated by marrow. Removing a small piece from the outer table is as tricky as trying to cut a small piece of veneer from a sheet of plywood without chipping the surrounding wood or damaging the other layers.
Once the outline had been cut, an incision no more than an eighth of an inch deep and barely as wide, Batra tried to pry the bone free.
He angled the edge of a small chisel-like tool into the incision and began tapping it with a hammer.
“Do you have a sharper, thinner osteotome?”
“Not a curved one.”
The risk was that he would pry up the inner table as well, exposing the dura mater of the brain. The tapping grew louder and louder.
Perhaps they were trying for too large a piece, Batra thought. He asked for the saw, divided the square into thirds and tried again.
Halls made light of the difficulty. He sang an old Cat Stevens song: “I’m looking for a hard-headed woman.”
Suddenly the first piece of bone lifted from the skull, and the inner table was unscathed.
The marrow was rough like honeycomb. Bone wax staunched the bleeding. A red slick had formed at Batra’s feet.
Three pieces of skull were retrieved and shaped into small poker chips. They were carefully tucked into a small valley that Kikkawa had exposed, and when the new alignment was established, Batra screwed the chips into place.
By 11:30, the OR was quiet. The whine of the drill and the tapping of hammer had ceased.
A nurse started mopping the blood from the floor and counting the sponges. Batra and Halls finished closing.
“We’re short,” the nurse announced.
“What?”
“A sponge. We’re missing a sponge.”
Everyone tried to stay cool. Batra and Halls stepped aside as a portable X-ray machine was wheeled in, and just as the technician started to align the camera with Ana’s head, a nurse noticed something soaked with blood on the floor, hidden under the base of the operating table. Someone laughed.
The doctors stepped into the waiting room. Ismael was reading a book about repairing Dodge pickups. Margarita was working on a Sudoku puzzle. Other family members stood close.
“It went very well,” Batra said. He explained everything they had done. Fran helped with the translation.
“Muy bien,” Ismael nodded. “Thank you very much.”
“Preguntas?” Any questions?
“No; that’s OK. Thank you very much.”
The family went to see Ana. Margarita started talking to her daughter and adjusted the blankets around her. The nurse handed her a tissue.
“Mejor,” Margarita said. “Ana is better.”
--
The traffic snaked though the residential back streets of Pomona to the Fairplex. It was a little before 8 a.m. on Feb. 1, 2008, and Ana was more nervous than she’d been for any of her surgeries.
Ismael followed the line of cars. He was happy today.
It had been a long journey, one that had begun more than 20 years ago when he and Margarita first noticed something wrong with their baby’s face and came to this country to get her treated.
Now Ana was about to become a U.S. citizen. She had passed the exam two months earlier and was even slightly annoyed that the questions had been so easy.
“They could have at least asked me the names of the original 13 colonies,” she said.
Today, there would be no quiz, just a case of nerves; and the long walk from the parking lot in the cool February air, the mountains gleaming with snow, did nothing to chase them away.
Dressed in brown plaid slacks, with the collar of her white shirt pulled over a brown sweater and her hair tied back, Ana puzzled at how casual some of the other people were.
“Sweats?” she asked. “You don’t come in sweats to the ceremony.”
Ushers with bullhorns directed the crowd into the cavernous exhibit hall, filled with folding chairs for 3,500 prospective U.S. citizens. Surrendering her green card, Ana was lost in the sea of people.
Restlessly they sat, waiting for the ceremony to begin, their scarves, turbans, burkas, bindis, coiffed and shorn hairstyles, glasses, mustaches, beards, high cheeks, rounded cheeks, plump lips, skinny lips, bushy eyebrows and meager eyebrows blending into one.
“All stand.”
The judge entered, and the clerk started the proceedings with an oath of allegiance.
The applicants raised their right hands.
“I hereby declare on oath. . ,” they began.
The recitation was soft and muffled, followed by applause.
“Congratulations,” the judge said. “You made it.”
--
It was a chilly night last October, and the Rodartes had invited family over to celebrate Ana’s 28th birthday.
Chicken legs and potato wedges bubbled in a deep fryer. Margarita prepared plates of potato salad, rice and beans and flour tortillas. Ismael chatted with friends. There was Tecate beer with salt and limes and, later, after the tables were moved aside, dancing to Los Tigrillos and Enrique Guzman beneath the tiki lights.
Surrounded by her cousins and friends, Ana talked on her cell, sipped a beer and shared pictures from her laptop. Her face was no longer the broad convolution of creases and dimples it had once been. Her left brow, nose and chin had been restored and, most significant, her condition appeared no worse than the scarring from a burn.
With such a seemingly recognizable injury, the world could open up to her.
With the features of this strange and frightening disorder gone, the question Ana asked as a child -- why was God so mean? -- might find an answer more in understanding and empathy than in shock.
Whether the tumors return, only time will tell. Batra was already talking about the next stage. He wanted to insert tissue expanders beneath her skin, a step toward removing old scars and other cosmetic defects. Ana was uncertain if she wanted to continue.
For now, though, she seemed happy. She was proud of her accomplishments, becoming a citizen, and she was looking forward to voting for the first time. She had a new boyfriend. “I still get butterflies when I see him,” she said.
--
Since that chilly October night and the start of the New Year, Ana has broken up with the boyfriend, and she went ahead with the tissue expanders. The surgery was simple, and now every Monday she and Fran drive to Batra’s office, where he gradually inflates the balloon-like devices.
The resulting headaches are unbearable, but they subside, and Batra is encouraged that she’s continuing the journey without the office having to call and remind her of her appointments.
Ana has also enrolled in school. In February, her mother drove her to the administrative office, just behind a Denny’s, and when she met with the admissions advisor, she was smiling. The interview went well. She learned that she needed to take an entrance exam and apply for financial aid.
As she filled out the forms, she didn’t think twice about the irony of starting a 10-month program with the Marinello School of Beauty. She was going to become a cosmetologist.
--
--
(BEGIN TEXT OF INFOBOX)
Neurofibromatosis
Neurofibromatosis refers to three genetic disorders characterized by tumor growth in tissue surrounding nerves. NF1 is the most common, occurring in 1 in 3,000 people. It can affect multiple organs, including the skin, brain and eyes. In about half the cases, NF1 appears as cafe-au-lait spots and bumps under the skin that require no treatment. In the other half, complications can include blindness, scoliosis and disfigurement.
Cause: NF1 is caused by a mutation in the gene responsible for producing neurofibromin, a protein that regulates cell division.
Treatment: There is no cure. However, drug therapies are being developed to target the biological mechanisms that control cell growth in NF1 tumors, and clinical trials are underway to test whether certain cancer treatments can fight the tumors.
More information is available from the Children’s Tumor Foundation ( www.ctf.org) and Neurofibromatosis Inc. ( www.nfinc.org).
--
Ana’s story
Times staff writer Thomas Curwen met Ana Rodarte in December 2005 at Scripps Memorial Hospital in La Jolla. Over the next three years, he conducted numerous interviews with her and her family members, friends and teachers. He and Ana also had an extensive e-mail correspondence about living with neurofibromatosis. Curwen and Times photographer Allen J. Schaben accompanied Ana to consultations with her doctors and observed three reconstructive surgeries at Scripps. Times staff writer Paloma Esquivel served as interpreter during interviews with Ana’s parents.
