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The transformation of America Alcantara http://www.statesman.com/news/news/the-transformation-of-america-alc... 11:01 p.m. Wednesday, Nov. 25, 2009 | Filed in: News The metal doors leading to the operating room at Dell Children's Medical Center swung open, and the girl on the gurney seemed so much younger than 7 when she stretched out her arms to her mother and wailed, "Mommy, Mommy." América Alcántara of Austin bent to kiss her daughter's misshapen head, freed her hand from her daughter's tight grasp and fought back tears as the cries from her only child filled the hall. The bed swung away to take the girl to a life-altering surgery. A hospital employee asked if she was OK. Alcántara, a 33-year-old single mom who supports herself and her daughter by cleaning houses, nodded and smiled briefly. "Sí; gracias," she said. Alcántara, an aspiring special education teacher's aide, knew the June 3 operation was urgent. Her daughter, América Rivera Alcántara, was born with Crouzon syndrome, a rare condition in which the bones of the face and skull fuse too soon — causing increasing pressure as the brain, eyes and other parts of the face continue growing. The condition left América with facial deformities and bulging eyes; failing vision and hearing; breathing problems including sleep apnea, in which breathing stops temporarily during the night; and a prominent underbite. She also was developmentally delayed, another possible effect of the disorder. Her daughter was about to undergo a technically demanding surgery called a monobloc — the first of its kindon a child at Dell Children's — that involved cutting open América's skull, creating a gap in the bone, then putting titanium plates in her forehead to hold the realigned bone in place and creating more space for new bone to grow in her skull and face. When Dell Children's opened in 2007, it had the Austin area's first craniofacial team able to do such an operation. Any Baby Can, a charity assisting Alcántara with navigating a complex medical system, helped bring the hospital and the family together in January after the team read about América during the American- The transformation of America Alcantara | www.statesman.com http://www.statesman.com/news/news/the-transformation-of-america-alc... Statesman's Season for Caring campaign last year. Alcántara had been taking América to specialists in Houston since she was 2, but surgery there had been postponed several times. Alcántara, who was born in Chicago but raised in Mexico, met Dr. Patrick Kelley, a craniofacial surgeon who speaksSpanish, and two other doctors on the hospital's craniofacial team: pediatric neurosurgeon Dr. Tim George and orthodontist Dr. Adriana Da Silveira. Alcántara quickly decided she wanted the surgery at Dell Children's. The surgery would push the front of América's skull forward to reduce the pressure on her brain and correct her bulging eyes, worsening vision and breathing problems. América would emerge with a metal halo bolted to her skull and would need more surgeries over the years, especially on her lower jaw, the part of the face that grows until a person is 16. It was a big, risky operation that Kelley said was similar to a face transplant in its complexity and effect on a patient's appearance. Opening her skull could expose her brain to possible infection, such as meningitis, a potentially lethal swelling of the brain's membranes. And América faced other potential, although rare, surgical complications: blindness, brain damage, death. Although doctors explained that the surgery was not cosmetic, they expected to create a normal face for América. Alcántara wanted América, who was born in Austin and is covered by Medicaid, to look like other children. The stares of adults and fearful looks of children hurt her. "Some children run away crying," Alcántara said earlier this year in a soft voice. Before the surgery, members of the craniofacial team showed América a doll with a halo to try to explain the operation, but América recoiled in fear and didn't want to listen. Mother and daughter also got a tour of the surgery area and explanations of the procedures, but Alcántara said her daughter didn't fully understand what was going to happen. Alcántara tried to imagine slowing down her energetic daughter so she could heal. América was always moving. She thrashed all night in her sleep. What would that do to the halo? As Alcántara began the nine-hour wait with her father, Pedro Alcántara of Austin, outside the operating room that June day, she also wondered what América would be like when she saw her again. América loved to sing and dance. She was fascinated by cameras, always snapping photos of the doctors and nurses. But she was also shy. She rarely spoke in front of strangers and almost always hid behind her mother. Would she be the same child she was before? It would be a long time before her mother would know. The surgery Inside the operating room, Kelley, George and the rest of their team — a surgeonin-training and a crew of nurses and technicians — waited for América. She was still crying when she was wheeled in at 8:15 a.m. Kelley was eager to get started. After the anesthesia put América to sleep, he inserted a breathing tube into América's mouth and down her windpipe and wired it The transformation of America Alcantara | www.statesman.com http://www.statesman.com/news/news/the-transformation-of-america-alc... to her lower jawbone to keep the tube from coming loose during the procedure. He then sewed her eyes shut. Her black hair was sheared close to her scalp. Kelley, 41, and George, 49, positioned her for the operation, and the team used cleansing solutions to sanitize América's head, neck and shoulders. By then, more than two hours had passed. Kelley cut América's skull open from ear to ear and removed a front bone from the skull, exposing her brain. George separated América's brain from the top of her skull. He worked meticulously to protect the brain's lining, or dura. "Even a pinhole in the dura can cause meningitis," Kelley said. Kelley separated América's eyes from the muscles and nerves, careful to keep the optic nerve intact. "You are on hyper-alert the whole time when you're making (those) cuts," Kelley said. "Everybody is quiet and focused, and nobody is telling any jokes." Kelley, who usually likes to tell jokes and is more talkative than the low-key George, said he can't remember if the nurse who chooses music in the operating room was playing anything that day. Although he had performed monoblocs on other children with Crouzon, and George had assisted on monoblocs, América was their first together. The surgeons made more cuts in América's facial bones to create space and placed the titanium plates. They attached a splint that Da Silveira had designed to América's teeth and upper jaw to begin correcting her bite. They put in drains to remove fluids from América's wounds and sewed up the incisions so they could attach the purple metal halo to her head. Until then, the procedure had been going well, Kelley said. But the right side of América's skull was thin, and after the halo was bolted down on the left side, "I felt one of the screws pop," Kelley said. He saw a tiny crack in her skull. The whole procedure could have gone from success to catastrophe in an instant, he said. "You don't know whether the crack is going to spread." It didn't, and they came up with a solution: remove the halo and reattach it higher on the skull and hope the bone would be stronger. It worked. By 5:30 p.m. the operation was over. América was wheeled to the intensive care unit, where she would be kept under heavy sedation. Alcántara, who had received three reassuring updates during the day from operating room nurse Margo Goulas, was told the operation was a success. Still, Alcántara, who had been the picture of calm earlier, was shocked when she saw her daughter in the ICU. The girl in the mirror "Oh my God, I was ... crying, 'Oh, my baby,' " she recalled. Not only was América tied to a maze of wires and tubes, her head had swelled to twice its normal size. "The stitches were really big, and she looked purple, especially around the eyes," Alcántara said. "Blood was draining from her head, and I was thinking, 'Maybe when she wakes, she won't talk or move her legs.' " The transformation of America Alcantara | www.statesman.com http://www.statesman.com/news/news/the-transformation-of-america-alc... It would be 16 days before América would wake up from sedation, and Alcántara would ask Kelley over and over whether América's brain had been damaged. Kelley reassured her, but Alcántara still fretted, and doctors were on guard for infection and other surprises. She spent every other night in the ICU and was there each day, waiting for her daughter's eyes to open. "I would talk to her," Alcántara said. "I would tell her, 'Mommy's here. I love you.' " América woke up slowly June 19. She couldn't speak or move, Alcántara said. Alcántara was terrified, but Kelley told her that because of all América had been through, the response was normal. América would need physical therapy, but she would regain movement and speech. América spent three weeks in the ICU. During that time, the doctors performed a tracheostomy, creating a hole through the neck into the windpipe, to help her breathe better. On June 24, América moved to a regular floor in the hospital. Four days later, she looked into a mirror for the first time. She saw the big purple halo, the small sprouts of hair, the gashes where metal attached to skin. But América didn't cry, Alcántara said. She wanted her earrings. Alcántara, who allowed herself a few brief trips home to shower and get clothes, kept a bedside vigil. At night, Alcántara said, América wouldn't let her sleep on the small pull-out sofa in the room. So Alcántara slept in the little hospital bed, curled around América's legs. As the swelling began to go down, Alcántara said she could see some improvement in América's appearance, mainly around the eyes. But she had hoped for more dramatic change sooner. As June melted into July, doctors said América could go home soon. América was eager, but Alcántara was worried. The weight of caring for her daughter with her trach and halo scared her. She was walking again after physical therapy in the hospital, Alcántara said. But what if she bumped into a wall? Or fell while playing? Alcántara would need to learn about her daughter's medications and how to care for her wounds. She would have to learn CPR in case of an emergency before taking América home. Scariest of all, every day she used a special wrench-like device to tighten the screws on América's halo just right so it could keep moving the bones into place. On July 8, more than a month after the surgery, the hospital staff assured Alcántara that she was ready to take her daughter home. Mother and daughter packed toys, clothes and household belongings on a cart and headed out of the room. "I have a new job now," Alcántara said, trying to sound confident. "I'm (a) nurse." Surviving the summer Alcántara checked boxes on a chart every time she tightened a screw on América's halo. For the first two weeks, a nurse came to their North Austin apartment for 12 hours a day during the week, but as América grew stronger, the nurse's hours were reduced. Having a nurse freed Alcántara to spend a couple of hours a day studying for a teacher's aid certification test given in September. Passing it could mean a better future, and Alcántara wanted to work in special education, a career inspired by her The transformation of America Alcantara | www.statesman.com http://www.statesman.com/news/news/the-transformation-of-america-alc... daughter. On América's first day out of the apartment July 13, they went to the craniofacial clinic at Strictly Pediatrics near the Dell Children's campus for one of two weekly appointments that would go on for four months. "How are you doing, princess?" Kelley said, greeting América. América didn't answer, but it wasn't because she couldn't talk. Her speech had returned after she came home from the hospital, Alcántara said. América almost never talked on those visits. Kelley told América to follow his finger with her eyes. Her eyes tracked in unison. He asked her to open and close her mouth. Da Silveira, the orthodontist, saw a big improvement in América's bite. Then Kelley tightened the screws on her halo. América kicked her leg but didn't make a sound. "Lo siento," he said. I'm sorry. América's head was still swollen, and she couldn't completely close her eyes, but she was making steady progress. Her cheeks were puffy, and she had an extra chin, but her underbite was gone, and the eyes that had scared other children no longer bulged. Neighbors and family had been visiting her at home, bringing gifts and entertaining her. América feasted on soft-boiled eggs, and she lost weight. She told her mother she no longer had a stomach. But as the brutally hot summer wore on and América felt better, she grew bored. Her computer games and the occasional visitor weren't enough. She wanted to go swimming. "América says, 'Mommy, pool!' all the time," Alcántara said. "Sometimes, she cries." América was to start second grade at Cook Elementary School on Aug. 24, but the doctors and her mom were concerned. Alcántara worried most about possible damage to the halo, and América still had the trach tube. Alcántara wanted both gone before América went to school, but no dates for removing them had been set. América was schooled at home by an Austin teacher to help her transition from Spanish to English. They worked on ABCs and counting to 10. Alcántara, meanwhile, took the teacher's aide certification test, which was in English, a struggle for her. But she passed with an 80, five points above the cut-off. In late September, Kelley suggested that América visit her school to prepare for her return; she did so the next month. When Sarai Bautista, a friend of América's from first grade, opened the door of the portable classroom, she exclaimed, "It's América!" Teacher Jennifer Perez asked the students how many remembered América from last year — most of the hands in the room shot into the air. On Sept. 23, Kelley discovered that the area around one of the screws on América's halo had become infected. He decided the forward movement of her skull had progressed enough and that it was time for the halo to come off. More milestones followed. The trach tube came out at the end of October. Kelley also did a procedure to remove scars around her eyes, and for this surgery, América sat The transformation of America Alcantara | www.statesman.com http://www.statesman.com/news/news/the-transformation-of-america-alc... Buddha-like on the gurney when the nurses came to take her to the operating room and cried only briefly when her mom left. Everyone who knew América had noticed she was different. She was calmer, more independent and confident. "Her personality has really blossomed," said Allison Daskam, a spokeswoman for Any Baby Can. The doctors said she is not afraid of them any longer. "She used to hide behind her mom," Kelley said. "Now she looks me in the eye. "Put some water on her and let her grow." Back to school On Nov. 5, América awakened at 6:30 a.m. for her first day of school "with a big smile," Alcántara said. "She was ready to go." They arrived in the rain at 7:38 a.m. with América dressed in a dark pink top, pink plaid pants and pink sneakers. The place where the trach had been was taped with a white bandage; doctors said the hole would close naturally. When América walked into her classroom, several children applauded. Others grinned. Perez smiled broadly as América immediately pulled out a sheet of paper for the handwriting exercise and printed her name. "She looks a whole lot better," said Perez, who had seen América before the surgery. "She looks great." Her left eye, the one with the worst vision, still doesn't close completely, Alcántara said, but she is happy with the changes in her daughter, and people don't stare like they once did. América will need braces in a couple of years, said Da Silveira, the orthodontist, and she will need another surgery to correct her bite when her face stops growing. The doctors will continue to see her in the months and years ahead "to make sure what we did endures over time," Kelley said. Hospital spokeswoman Matilda Sanchez said that charges for América's June surgery, not counting physician fees, were estimated at between $500,000 and $650,000. The doctors are hopeful, and they said a big reason is that Alcántara is so watchful and complies so thoroughly with their directions. "She was great every step of the way," Da Silveira said. Alcántara is still cleaning houses but is watching for a teacher's aide job. América, now 8, takes the bus to school and loves going, her mother said. Her first day happened to be a make-up day for students who had not gotten their class pictures taken. When América's turn came, the girl who was so comfortable on the other side of the camera hopped up on the wooden box. She stood alone and grinned. "What a beautiful smile," the photographer cooed. Then, she snapped her picture. [email protected]; 445-3619