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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-
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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
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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.' "
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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
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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
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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.
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