Last in a five-part series
So far: In one of Dr. David Donahue's longest and most frustrating weeks in recent memory, the pediatric neurosurgeon cuts out a piece of a young boy's brain, hoping to stop life-threatening seizures. But Roberto's seizures begin again anyway, forcing an exhausted surgeon into one of his most delicate operations.
Friday, April 30
The delicate surgical procedure called a corpus callosotomy is scheduled for 8:30 a.m., but the operating room remains empty when that time comes, and members of the surgical team at Cook Children's Medical Center are left to cool their heels, waiting to be paged.
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"Mom's having second thoughts," one nurse says.
Who can blame her? For years Leticia Gutierrez has dreaded brain surgery for her young son, Roberto, holding out until this spring when the frequency and intensity of the boy's epileptic seizures posed ever greater threats to his life.
For three straight days, they have taken Roberto away to cut open his head, leaving his mother trembling in the waiting room. On the third day, Dr. David Donahue, the hospital's chief neurosurgeon, had actually cut out a piece of Roberto's brain. That should have done it. But Thursday night the seizures came back, not nearly as often as before, but terrible episodes just the same.
Earlier in the week, doctors told her that if the other surgeries did not work, there was one last procedure they could try -- burrowing deep into Roberto's brain to cut a long groove in the corpus callosum. This long bundle of nerve fibers allows one hemisphere of the brain to communicate with the other. But those fibers are also the conduit for seizures passing across Roberto's head, causing him to drop without warning, like he had been shot.
With a corpus callosotomy, Roberto has a 70 percent chance of living seizure-free, doctors say, at least for a while. That's why, early Friday morning, Leticia agrees to one last operation.
But when Donahue comes into the pre-op ward in scrubs, the mother freaks out. She doesn't cry, but her head begins to spin, and she peppers the surgeon with questions, one after another. What if he goes into a coma? What if he doesn't recognize her after surgery? What if he has amnesia? What if he has an aneurysm?
In two decades as a pediatric neurosurgeon, Donahue has seen this many times before -- a complicated procedure, a sleep-deprived parent and last-minute panic that brings everything to a halt.
"If we're steamrolling over this woman in any way, that's not right," Donahue says. "For the rest of this woman's life, she would regret her decision if anything happened that she didn't expect to happen."
He gets on the telephone and tells his team to stand down.
"You don't know enough," Donahue says to Leticia. "We're not going anywhere until you are good with this, because this is your baby."
Leticia calls her fiance, John, who is starting a new job as a construction worker.
"I don't care," she says. "I'm scared, and I need you here."
When John arrives, he joins Leticia, Donahue and Dr. Angel Hernandez, Roberto's longtime neurologist. The doctors explain the procedure one more time, listing the risks -- bleeding, infection -- that by now are familiar. The operation will probably leave Roberto mentally foggy, the doctors say. Because communication between the hemispheres will be severed, his right hand might not know what his left is doing, and so on. But the brain will eventually compensate, and the side effects will probably clear in time.
In any event, the dangers of Roberto's seizures outweigh the surgical risks.
"One of these seizures could eventually take Roberto's life," Hernandez says.
"OK," the mother says, starting to cry. "Do it."
'It's destroying things'
That morning, things have gone from bad to worse for Donahue. At dawn, he drove downtown to a meeting of the Texas Medical Association at the Omni Hotel, where the political and economic realities of American healthcare were widely bemoaned. That always puts him in a bad mood. Then, at the hospital, he learned that Roberto had seized again overnight. His last recourse is a corpus callosotomy, which requires painstaking precision.
"It's destroying things," he says. "It's sawing the brain in half. I don't like that. It's a destructive operation, but the kids are in such bad shape, they're actually in better shape when they're through with it."
Then came Leticia's meltdown, and a delay that knocked his surgical team off its rhythm.
"You've got all these people prepared to go," Donahue says. "Things always seem to go wrong more often when the routine is broken. If a case is delayed by inadequate preparation, to me that is a potential catastrophe. But there is no choice if the family isn't right. Then you've got to delay it, absolutely."
Donahue looks tired when he finally gets to the OR, the lines much deeper on his face. His typical impishness is missing.
"For the fourth and final time, we are going to operate on this poor child," he says.
He leaves the operating room as Roberto is wheeled in on a gurney. In an adjoining room, Donahue sits before a computer to study the boy's scans. Through a large window he can watch his team prepping Roberto for the surgery. He looks at his computer screen and pivots in his chair, remembering the meeting he attended that morning.
"The system is really broken," he says. "There is so much corruption and so much dishonesty in the legislative process and insurance companies, and the people making money on healthcare are basically managing their portfolios. They make huge amounts of money off the work that I do, off the work that the people on my team do. The people who manipulate things, they take 10 percent here and 5 percent there, draining off dollars that should be going to patient care."
He looks into the operating room and thinks of his young patient. He thinks of Roberto's parents, working-class people without health insurance. The boy's medical bills, tens of thousands of dollars that week alone, are being paid by Medicaid obtained by Roberto's family because of his chronic disease.
"At what point are we going to be told that it's an unnecessary luxury to take care of this kid?" he says. "To put him in a home and let him seize all day because he's never going to be productive. How long is that going to take?"
Donahue wonders what that would do to a parent like Roberto's mother, a uniquely devoted person who had spent that week walking back and forth between the hospital chapel and the waiting room, terrified every time they took her soon into the OR.
"The minute that we negate that intangible, that love, we're off to the camps," Donahue says. "These kids will be packaged up and turned into sausage and exterminated the way they were in Nazi Germany. If this kid should not be operated on, I wouldn't do it. You have to keep rechecking yourself, to make sure you're doing the right thing, making the right ethical decisions. But the absolute part of this is a mother's love for her child. You've got to keep the profit motive out of it. How you do that, I don't know. I just wasn't made to be a politician."
Donahue has been talking for 15 minutes. In the room through the glass, his team is ready.
"We'll try to divide this structure [the corpus callosum] from front to back," he says. "So here we go."
Deeper and deeper
As Donahue and his team open Roberto's head for the fourth time that week, the music of Tom Petty comes through the speakers. The surgeon removes the skull flap once again and cuts away more of the skull bone to give himself more room to work. Stitches are removed from the dura, a membrane between skull and brain, and plastic electrodes are removed. Donahue uses surgical scissors to lengthen the incision in the dura.
"Bring in the scope," he says.
A massive microscope is slid across the room, its lens pointed down over Roberto's head. A nurse removes Donahue's glasses, and the surgeon looks through the eyepiece as he works. Directly across the table, Donahue's longtime surgical assistant, Rosa Leos, peers through a second eyepiece. The inner parts of Roberto's brain, greatly magnified, appear on several television monitors in the OR.
The music is shut off, the signal to the team that a moment of peril has arrived, that communication needs to be perfect.
Donahue uses a tiny, paddlelike instrument to gently wedge apart the hemispheres. In a healthy brain, the hemispheres are not joined by tissue, but the trauma of hundreds of drop seizures has clearly taken its toll on Roberto. Scar tissue connects the halves of Roberto's brain, forcing Donahue to use another instrument called a bipolar, which passes electrical current through two prongs, to detach the hemispheres and cauterize blood vessels.
Leos sucks out blood and cerebrospinal fluid, giving Donahue a clearer view as he probes. As the surgeon wedges the hemispheres apart, Leos uses flat strips of pliable metal, retractors, to keep them separate.
"The brain is really fragile, so I'm being awfully careful," Donahue says. "The tricky part is getting there, especially with a brain that's a little bit puffy."
Donahue inches his way between the hemispheres, going deeper and deeper, until he sees the anatomic landmark he is looking for.
"There it is," he says.
Through the microscope, two red lines come into focus running parallel to each other, the pericallosal arteries. Directly underneath, vivid white against gray surrounding brain tissue, is the corpus callosum. Leos places a piece of gauze between the hemispheres to hold them apart.
"I think we're ready to start," Donahue says.
Leos hands him a blunt dissection instrument. A sharper instrument is not necessary because the nerve fibers to be cut are pliable and soft. The task is to make a long groove in the corpus callosum about a quarter-inch deep without nicking the arteries lying a 100th of an inch on either side. That could be catastrophic.
"As long as we stay in the middle [of the arteries] we shouldn't get into trouble," Donahue says, staring into the eyepiece, his hands in Roberto's brain.
Leos holds a retractor in one hand and provides suction with the other.
"I'm really amazed by how much spinal fluid he has left after all that surgery," Donahue says.
The surgeon begins to pierce the corpus callosum, working from the back of Roberto's head toward the front. It takes nearly an hour to make his way the length of the nerve fibers. Then it is done and Donahue is thrilled by what he sees. The ependyma, another thin membrane of the inner brain, is poking up through the new groove in the corpus callosum.
"This is amazing," he says. "I almost never see the ependyma like this. I'm very happy. This means we were successful."
Leos removes the gauze and retractors. The surgeon retreats from the middle of Roberto's brain, and the microscope is moved away.
"Now, how about some music," Donahue says.
"How about Simply Red?" a nurse asks.
"Simply Red," Donahue says. "Love it. I have great taste in music, discriminating taste."
As his team finishes closing, Donahue leaves the OR in a buoyant mood, particularly compared with the torpor of a few hours before.
"The thing that this kid has in his favor is that he's 6 years old," he says. "He may learn some stuff, get some stuff back. He got a corpus callosotomy. He's a full member of the Donahue club."
When Donahue hurries into the waiting room, Leticia's fiance, John, is asleep, his head on her lap.
"Sleeping on the job," Donahue says. "You're supposed to be sitting here worrying all the time."
John rubs his eyes as the surgeon sits.
"We're real pleased," Donahue says. "We split the corpus callosum. I think we got 95 percent of the fibers, if not all of them."
"Will he know me?" Leticia says.
"He may not act like he knows you," Donahue says. "He should hear your voice and feel your touch. He might not put two and two together right away. But after two weeks I think we'll see improvement. I really hope this stops the drop attacks and the seizures."
Leticia nods warily.
"You guys have really tried to do everything you could do," Donahue says. "You've stayed with us the whole time, and it's been a hard week -- four operations, which is a lot."
"I know," Leticia says.
"Thank you for letting me take care of him," Donahue says. "I think that now that everything's done we made the right move. I might have felt differently if it would have gone badly. I might have said, well, we shouldn't have done that. But fortunately, it went well."
"Thank God," Leticia says.
"You'll be able to see him within an hour," Donahue says. "Hope you can get some rest."
Donahue hugs Leticia, shakes John's hand and hurries from the waiting room. In the corridor outside, he sees a woman he can't immediately place. Then it comes back. Years before, Donahue had removed a malignant tumor from her son's brain.
"Everything going OK?" Donahue says.
"Just fine," the woman says. "He's going to college."
Donahue smiles and hugs that mother, too.
"Glad to hear it," he says.
The surgeon walks quickly off down the hospital corridor. There might be time to grab a sandwich before seeing his next young patient.
Tim Madigan, 817-390-7544