The storms behind those eyes

A 5-year-old racked by seizures must make a sacrifice, as her little brother did, to stop the slow, steady killing of her mind. But how much of a sacrifice?

Dominique Bacci, 5, rests after a series of seizures.

Story by CHRISTOPHER GOFFARD | Photography by TONI L. SANDYS

© St. Petersburg Times, published May 16, 1999

MIAMI -- On the morning they open her head for the first time, 5-year-old Dominique Bacci is strangely calm, so calm that nurses opt not to drug her as they ready the cutting tools.

Calm as she clings to her parents in the hospital waiting room, calm as blood is drawn, calm as a doctor uses the phrase "tiger country" to describe the treacherous terrain to be navigated inside her skull.

Neurologists placed electrodes in her skull temporarily to monitor brain activity.

It's not until she is wheeled to surgery and her parents vanish and she finds herself in that bright, coldly clean room, with the white-masked strangers huddled over her, with the monster racks of sharp, gleaming tools nearby, that she cries.

Outside the room, down the hall at Miami Children's Hospital, wait Kelly and Roy Bacci, wondering if they've just said goodbye to the daughter they know.

They've been here before.

A year ago, a surgeon saved the Baccis' toddler son, Destin, from uncontrollable epilepsy -- and gave him his best chance at a normal life -- by removing the left half of his brain. A success.

Now, the same surgeon, Dr. Antonio Prats, is shaving a U-shaped swath of hair above their daughter's right ear. Somewhere below lives the source of the electrical firestorms that strafe Dominique's brain.

To pinpoint it, Prats must drill through the sheath of ivory bone and plant electrode-grids against the cortical surface itself. The plan is to enter a second time and cut out the bad tissue.

But Prats worries that it dwells in a dangerous place. If that place is the language cortex, as he fears, taking it out would produce a girl who is mute.

The Baccis know the risks. They're here because nothing else has worked, because the accumulated assaults of a dozen seizures a week have kept their 5-year-old daughter with the voice of a 3-year-old, because she cannot trace her ABCs.

Hours before doctors plant electrodes against her brain, Dominique clings to her father, Roy Bacci: "I think she's starting to realize what's going on," he says.

They're here because if you peer too closely, past the girl's porcelain-doll smile, you'll see a row of chipped and jagged baby teeth -- like tiny fragments of ground glass sunk into the gums -- caused by the uncontrolled clenching of her jaws.

They're here because the storms warp her emotions in the cruelest ways: Crowds frighten Dominique so much that she digs trembling nails into the flesh of her father's neck as he carries her through the mall, and a sad moment in Charlotte's Web -- the runt pig's departure from the farm -- once touched off a daylong screaming jag, with cries of Why? Why? Why? Why?

"She's scared of almost everything," says Kelly.

But at intervals, epilepsy lets Dominique be a child. It's during these moments the decision to operate is most painful.

Like the spring day not long ago, when the girl steered a plastic pink tricycle serenely over the lawn, her brown hair pinned back and full of sun.

"She looks normal. That's what makes it scarier," says Roy, 31, a gentle, hulking ex-Marine. Strangers sometimes stop the Baccis, frozen by the girl's startling brown eyes, to remark on them.

"When she's being real cute, and being daddy's little girl, I think, "What am I going to do to my little girl with this surgery?' "

In the end, though, the choice felt like no choice, considering the terrible mental picture they carry of their daughter as a grown woman, if the storms in her head aren't silenced: They see eyes shallow as a doll's, and a lower lip sagging forever open.

Wasn't Destin, now a bustling, fat-cheeked 2-year-old, proof of medical science's ability to perform the impossible? Wasn't his halved brain already learning to rewire itself? Wasn't he running, clutching with his good left hand, starting to wrap his mouth around a handful of words?

Wasn't there room enough for a second miracle?

So Roy and Kelly bundle Dominique into their Ford pickup, and pray the rattletrap truck survives the half-day drive from Port Richey to Miami.

When we get back, the Baccis tell Dominique, you'll be better. Doctors will have chased your seizures away.

They don't mention that doctors are giving only 50-50 odds.

Neurosurgeon Dr. Antonio Prats inks a line along the place where he will open Dominique's head for her first surgery.

The first surgery

"I'm getting nervous," Kelly says

Destin stayed with friends in Port Richey, as did the Baccis' 7-year-old boy, Zackary, who, alone among their three children, has shown no signs of epilepsy. Now Kelly gets Zackary on the phone, long-distance, so the boy can wish his sister luck.

Zackary asks his mother if Dominique will die.

Kelly cries, catches herself quickly. "No," she says sternly. "Don't even say that to your sister."

When Dominique speaks to her brother, her voice, as always, is tiny: "I'm having surgery tomorrow," she says. "Brain surgery." But she doesn't understand why Destin had only one surgery and she'll have two.

How much of what's going to happen to her does she grasp?

"My head will be purple," she says in a happy voice. She says it would be fun to leave the hospital in a wheelchair.

Next morning, Kelly daubs her daughter with holy water. Dominique wears the blue sneakers and a Tweety Bird shirt. On her wrist is the same Virgin Mary pendant her brother wore during his surgery.

"If her seizures are coming from the language cortex, it's going to be very difficult to make her seizure-free," Dr. Michael Duchowny, head of the hospital's epilepsy program, tells the family. Poking around in that area could cost the girl her speech. "It's tiger country," he says.

Part of Dominique's brain, the neurologist explains, never developed properly. He calls the epileptic focus an area of dysplasia, or malformation; electrodes will hunt it down.

Dr. Prats, the surgeon, explains: "If we can get that focus in an area we can cut out, that's a very good sign." For the surgeon who saved the Baccis' toddler son, this is a first: He has never seen epilepsy in siblings so severe that both required surgery.

At 44, Prats is trim and fit-looking, with a knobby chin and a kind manner, one of preternatural calm. It resides not only in his hands, as his job description demands, but in his voice.

It gives the Baccis comfort to know if bad news comes this week, it will come from Prats.

At 11:10 a.m. the girl, mellow till now, says goodbye to her parents. They kiss her one by one, and tell her to be brave. A nurse wheels her off. Right away she panics, asking for her mommy.

On the operating table, she sobs convulsively. She is 42 pounds of skinny, shivering bones under a pink blanket. In gloves and face masks, the grown-ups loom over her, fingering their machines, their tubes and needles, all the shiny sharp-edged things built to cut.

An anesthesiologist strokes her hair. When she wakes up, Dominique knows, she'll wear a crescent scar on her scalp to match her baby brother's. In minutes, under the sedatives, the room goes away.

Even as Prats shaves the arc of her hair, he comments on its loveliness. The surgeon has four daughters of his own.

"It's a lot easier to shave (all) the hair, but obviously cosmetically it's just a lot nicer" to do this, he says. "She's got beautiful hair."

Everyone agrees it shouldn't count, of course -- beauty shouldn't add or subtract from the importance of helping a patient -- but no one's sense of justice can abide the sight of a pale 5-year-old girl with huge almond eyes, asleep on a surgical slab.

The hospital staff feels it. Even Prats feels it. "She's a little doll," he says. "It shouldn't matter."

Dominique disappears beneath a small mountain of drapes. On the radio, a soft rock station plays Billy Joel and Cher.

Prats draws a blue pen along the naked U of scalp, then cuts along the ink line. A clipgun snaps a row of green plastic clamps onto each side of the incision. A heat needle teases the scalp from the bone; with it comes the faint smell of burnt flesh.

"Okay," Prats says calmly at 12:20 p.m., with the dull white curve of bone before him.

Now the drill whines, and fine white bits of bone fly like tiny wood shavings. Twenty minutes later, with an oval of skull pried free, Prats slices into the dura, the brain's thin leathery covering.

Under it, flat against the brain's glistening, corrugated brown surface, he slips a grid of 32 electrodes about the size of a Post-it note.

Beside it, he sets a thinner strip of eight electrodes, then a still thinner strip of four. The grids cover the frontal and parietal lobes, plus part of the temporal lobe.

"We want to record seizures," Prats says. "The beauty of this is, we can record directly from the brain."

White, green and red wires snake out of Dominique's head. Technicians already have hooked them to a machine, which translates brain activity into jagged lines on a chart.

"Hopefully she'll give us seizures by Friday, and we'll be able to map her and then we'll resect," Prats says. They've already blocked time in the same operating room for Friday.

Prats peels the dura back into place, slips the skull on and begins sewing Dominique Bacci's head shut.

Hours later, in the recovery room, Dominique wakes, drowses and wakes again long enough to ask her parents for Gatorade.

A tower of wrappings covers her head; leading out of the top are the wires tethered to the machine by her bedside.

"My heart is broken, seeing her like this," says Kelly. "She's my little girl."

Monday ends. They wait for the storms. After years of praying that seizures wouldn't come, now they need them.

The wait

On Thursday, Kelly, a 27-year-old mother who makes it her business to be unbreakable, cracks a little bit

Accustomed to chaos and uncertainty, Kelly fights her anxiety with supercharged, non-stop patter. She can rattle off whole chunks of Seizures and Epilepsy in Childhood: A Guide for Parents, a paperback she has pored over so many times the pages are popping out of the spine.

She makes it a point to know the medical details any nurse or stranger might ask about, to live on four hours of sleep. She quit waitressing to take care of her kids full time.

Kelly shoulders these duties in part because Roy, the hulking ex-Marine, is still recovering from a stroke he had last year. He needs strong pills to sleep. The family scrapes by with his VA checks and other government help.

What is Kelly Bacci like? Weeks ago, doctors found a lump in her breast and told her it may stem from a pituitary tumor. But during the weeklong stay at Miami Children's Hospital, she doesn't speak of it. She hasn't even had time for the tests she needs. Fix Dominique first.

But now Dr. Duchowny is telling her that sensory tests suggest epileptic activity in Dominique's motor strip -- a place where operating would likely cost her the use of her limbs.

They don't know for sure; Dominique hasn't experienced the full-blown seizures the doctors need to verify it.

Surgery is canceled for the next day.

Kelly, the unbreakable woman, weeps before the hospital staff. They've known her more than a year and have never seen it, but no one is surprised: They just expected it sooner.

Before now, no one at the hospital has seen Kelly Bacci cry. But minutes after a doctor tells her Dominique's epilepsy may be inoperable, she breaks down.

She apologizes. It's only her nerves wanting to jump through her skin.

Early Friday morning, while Kelly waits by her daughter's bed, Dominique jerks upright, eyes wide, as if bolting from a frightening dream. She does it again, and again, a dozen times, 50 times, more.

Night frights, Kelly calls them.

Machines record the storms, and doctors are astonished by what they show.

The seizures are coming from the girl's right motor strip, a worm of tissue about 10 centimeters long that winds vertically through the brain.

In fact, Prats explains to the Baccis on Friday morning, the epileptic focus corresponds precisely, by some uncanny neurological quirk, with Dominique's motor strip.

Cutting it out would leave her left side crippled.

"I need to tell you, it's not what I wanted to see," Prats says.

Surgery is back on, suddenly, but not the kind anybody wanted. Instead of taking out the bad tissue, Prats says, he'll make a row of parallel incisions on the surface of the brain.

He explains it to the family: Think of the brain's nerves as a series of trees running up and down. At the top, their branches join to form a rain-forest canopy.

The surgeon aims to slash those horizontal links, so the electricity from a seizure cannot jump between them. This won't impair the vertical fibers that control the body's functions.

It's their best shot, but Prats has doubts, serious doubts, that this will banish her seizures.

Roy, his voice weak, asks if the technique will at least lessen the long-term damage to Dominique's brain.

"It could," Prats says cautiously. "It could."

Kelly asks if it will make it easier to control the seizures with medication.

Again Prats makes no promises. That's one of the goals, he says, along with reducing the number of attacks.

He excuses himself to go change.

After her brothers Zackary and Destin arrive on Thursday, Dominique's room becomes a blur of activity. As the kids eat Popsicles in the small hospital room, life seems almost normal.

The second surgery

Throughout the two-hour surgery, Prats keeps turning to consult the hand-drawn diagram of Dominique's brain that hangs on the wall behind him. It shows the journey of her epilepsy over the motor strip, point by point

"Perfect," he says quietly. "That's perfect."

It's something he hasn't seen in his 10 years as a brain surgeon here. An inch to one side, and he could have helped her. He doesn't know why it should be where it is, any more than he knows why epilepsy should strike two kids from the same family.

"This is a worst-case scenario for this little girl," Prats says. "The whole seizure focus is in the motor cortex. It's exactly what we did not want to see."

The electrode grids sit discarded, useless now, on the operating room floor.

On the radio, Springsteen sings Dancing in the Dark, and Prats hums along under his mask. He speaks of taking his daughters to a Backstreet Boys concert, how all the screaming left him with a headache.

Surgery done, Prats staples the scalp closed. In the hallway, afterward, he apologizes to the Baccis for doing this, but it will make Dominique's scar heal better.

He explains again: He wasn't able to cut the epilepsy out; in cases where any of the bad tissue remains, seizures tend to persist.

Pratt speaks gently, but there's a note of defeat in his voice, and Kelly hears it.

She doesn't want him to forget the blessing his hands were able to bring them.

So she says wait, hold on. Little Destin, just down from Port Richey, is bustling around the hospital hall, and she brings him over.

Weak on one side, and limping a little, the boy otherwise resembles any other 2-year-old -- a whirl of energy, quick, curious ... and seizure-free.

The surgeon's face brightens. Everyone notices it. He stoops to look. He last saw the boy a year ago, when he took out half his brain.

You've gotten so big, Prats tells the boy.

Later, in his office, the surgeon remembers the encounter.

"That's wonderful," he says. "That's why you do what you do."

Dominique is something else.

"I don't think we've cured her of her seizures," he says. "Now we have to see how much we've helped her. If we haven't, it goes back to the parents -- how much of a deficit are you willing to accept?"

Recovery

In the waiting room that night, Kelly eats brown rice from a paper plate -- her first meal of the day -- and speaks of the evil dream that won't end

"I finally thought I was going to get to wake up, and it was going to be normal," she says. She feels like one of those rubber toys whose limbs children stretch like taffy till they snap off.

"Twelve hours ago, I didn't think we were going to have surgery," she says. "Now my daughter's in the ICU recovering from a surgery that may only make her a little better. We thought we were going to come home with a seizure-free child and have a normal life. And it's not the doctor's fault. It's just the luck of the draw."

The hours that follow are terrible.

From her bed, Dominique's big eyes look around unevenly, full of fear and bewilderment, and she doesn't blink. She can't answer to her name.

"It's almost like she's sleeping with her eyes open," Roy says. "You wonder, "Is she coming back?' "

Her limp hand is tiny, inside his. Her body seems even smaller, there beside her father's towering bulk, the huge arms marked with Marine Corps tattoos. "Whacky Bacci," they called him in the Corps -- a hint at the gung-ho ferocity that allowed him to finish first in Ranger school.

Now, all that training, all that power and size, feels pointless: How are you supposed to be a man, if that means protecting your child from the things in the world that can hurt her, when the enemy is a worm of lumpy tissue you can't even see?

"It's like you're helpless," Roy says. "Being big, being a Marine, it doesn't mean anything."

Standing by her bedside, Roy remarks how good it is that Prats is their doctor. It would be easy, Roy figures, for a brain surgeon to be stuck-up, to say, "Just feel lucky I'm doing your kid." But not Prats. He even apologized for the staples.

Next morning, as swelling on her brain lessens, Dominique can speak again. Brain scans show that nothing went wrong. Her family flanks her bed as she chews a Happy Meal cheeseburger, grinning.

Within days she leaves that place of cold, clean, white rooms, and tubes that go into your body, and gleaming tools built to cut, and she returns to the house she knows, the lawn, the cat, the pink room she sleeps in with the bin full of Barbies.

Hair is already growing over the row of 37 staples.

How do you explain to a 5-year-old girl that doctors had to open her head twice, only to learn they couldn't banish the storms?

How do you explain that doctors can't promise she'll be even a little better, that one day soon, Mommy and Daddy may have to choose: Cripple her, or allow the storms to continue the slow, steady killing of her mind?

Her parents don't know how to tell her.

To build up her courage, and their own, they had convinced her she would return from Miami better.

"All the way up to Miami, it was like pumping her up for the big game," Roy says. "The plan was good, until they said, "We can't take it out.' "

Days after the surgery, as her mother watches, the muscles in Dominique's face begin spasming. Her jaws smash together, over and over, and her mother can hear the cracking of tiny teeth.

Afterward, the girl doesn't remember these attacks. Sometimes, when they seem to be starting, Kelly runs up to ask, Honey, are you having a seizure?

No, Mommy, no, the girl says. Doctors chased them all away.

Just six days after surgeons operated a second time, Dominique is home, giving a playful hug to her older brother. "You look really good, Nikki," Zackary tells her.