Part IV: Family's hope for boy's future rests on Dr. Donahue and his team
Fourth of a five-part series
So far: Electrodes placed against Roberto's brain seem to pinpoint the source of his increasingly dangerous epileptic seizures. Dr. David Donahue prepares to remove that section of the 6-year-old's brain and a problematic growth that lies beneath.
Thursday, April 29
For the third time in as many days, the boy named Roberto is wheeled into an operating room at Cook Children's Medical Center.
"I'm making a career out of this kid," Dr. David Donahue, the hospital's head neurosurgeon, says as he stands outside the OR.
The first two procedures had been less invasive, laying grids of electrodes against the outside of Roberto's brain to pinpoint the source of intensifying epileptic seizures. There had been no real violation of the brain itself.
But on this day, Donahue and his team plan to cut out, or resect, the problematic brain tissue and extract a large growth called a tuber that lies beneath. After a series of tests, scans and data from the electrodes, doctors are confident that the tuber is the primary source of the electrical storm that has been raging in Roberto's head for years.
"We're definitely resecting today, so get ready for blood loss," Donahue says.
He will be working on the left side of Roberto's brain, very close to the motor cortex that controls movement on the boy's right side. But risks inherent with the surgery are now outweighed by the danger from the seizures, which occur up to 20 times a day and increasingly threaten Roberto's life.
"I've been suggesting surgery to this family for years," Dr. Angel Hernandez, head of the hospital's epilepsy unit, says as he waits for the surgery to begin. "It's a scary proposition, putting a kid in harm's way. But the mother came to understand that this was the only way he was going to get better. Even though he's severely autistic, and his long-term prognosis is not good, to this family he smiles, he walks, he plays with toys, and they want this kid to be able to do that again without dropping on his head."
One of those falls could be fatal. It has happened so many times before, to so many who suffered from epilepsy. "In epilepsy, sudden death is very common," Donahue says.
No one knows that better than the surgeon. One of those deaths, long ago, changed the course of his life.
A sibling's pain
Tighe Donahue was David's older brother by four years. When Tighe was about 12, a German shepherd jumped out in front of his bicycle, causing him to pitch forward over the handlebars and land on his head. Chronic epileptic seizures were likely the result of the severe brain trauma Tighe suffered that day. A bright, extremely happy boy until then, Tighe became afflicted with terrible convulsive episodes that often bordered on physical violence as he grew into a young adult.
"He was 6-2, had red hair, was good-looking, smart, personable, and then he became someone who didn't know when he was going to fall down and have a seizure," David Donahue said recently. "Someone who couldn't drive. Someone who couldn't go off to school. He would throw things and be angry and make my parents' lives nervous. He would run away from home and hitchhike and then be found on the side of the road, unconscious because he had a seizure. He never took drugs. He never drank. He just had terrible, untreated, temporal lobe epilepsy."
Though Tighe never physically attacked him, David Donahue was often the target of his brother's unpredictable threats. Bill Donahue, David's older brother by 10 years, said David's decision to attend a Catholic boarding school was as much about getting away from Tighe as it was studying for the priesthood.
At the boarding school, it was David Donahue's task to ring the morning bell before breakfast.
"So one day I got up and rang the bell," Donahue said. "I just remembered feeling like I was a very responsible person. Then I got a call from the new rector, Father Schmidt. He said he had some very bad news. He said, 'Your brother Tighe is dead.' He had a huge grand mal seizure and came off the bed and hit his head." He was 19.
"I recall being relieved and angry that he was dead, all at the same time," Donahue said. "Life became a lot simpler after that."
He paused and seemed surprised by emotions that swept over him.
"Siblings of sick children have a hard life," he said finally. "I get choked up because these siblings, they go through hell. All they're doing is ducking blows and trying to bail water. They feel guilty. They feel neglected because everyone is worried about the sick one. They don't understand what's happening to their brother or their sister.
"It took me a long time to sort through this because I was really angry at my parents," Donahue said. "Really angry at my brother. Angry at the medical system. So there is a whole lot of emotion out there that people deal with.
"That may have subconsciously had something to do with it," Donahue said of his choice of careers. "I never really thought about it at the time."
Donahue pulls his iPod from his backpack and hands it to a nurse, who hooks it into the OR's sound system. That morning he worries that the surgery won't stop the seizures, or that he will misjudge the location of the motor cortex and injure Roberto's right side. The surgeon slips on a surgical mask and stands over a sink, rubbing soap up to his elbows. He finishes scrubbing and pushes through the door to the OR, pleased to be greeted by the Beatles.
For the third straight day, the long incision across Roberto's head is opened and his scalp is folded back. Donahue uses a Phillips screwdriver to remove screws that hold the skull flap in place. The thin, smooth, off-white piece of rounded bone is popped out and placed on a tray. Beneath the skull, membrane between the brain and skull is covered in clotted blood from the previous surgeries.
Children are surprisingly resilient and can tolerate multiple operations much better than adults, Donahue knows. But with every new procedure, Roberto's risk of infection goes up.
"It's a little messier every time you go back in," Donahue says.
Donahue's longtime assistant, Rosa Leos, hands the surgeon an instrument called a bipolar, which passes electrical current between two prongs. It can simultaneously dissect tissue and cauterize blood vessels, which is essential to reduce bleeding, always a major risk in neurosurgery. Donahue uses the bipolar to penetrate a tough final membrane that protects the brain, the pia.
Earlier that morning, Donahue and Hernandez had carefully mapped out the part of the brain to be removed, and after three decades of experience, the surgeon knows instinctively where to cut.
"It's like an experienced cab driver in New York," Donahue says. "They know exactly how to go to get where they need to be. Sometimes there are unexpected roadblocks, but experience and imaging gets you to the right place."
Leos hands Donahue a blunt dissection instrument that he uses to peel through the targeted brain tissue, which has the density and texture of an omelet.
"The brain is really soft," Donahue says. "It's really cool because it's dynamic and easy to cut into. You don't need a sharp instrument once you get through the pia."
The song Help comes over the speakers. Donahue continues to dissect a piece of brain tissue roughly the size of a pet-store turtle. The tissue has been compromised by the tuber beneath it, and it is dispensable because it does not control any vital body functions.
As he prods at the brain, Donahue cauterizes blood vessels. A piece of tissue a half-inch thick and 2 inches in diameter is eventually detached and handed to a nurse.
"It's pretty big, but pretty useless" to Roberto, Donahue says.
The tuber is now exposed, a gray nonmalignant mass the size and shape of an adult thumb, with the hard texture of gristle. Both Donahue and Hernandez, longtime specialists in epilepsy, are surprised by what they see.
"Dave, look at that," Hernandez says. "It's huge. It's huge."
"We should take this tuber to the fair," Donahue says.
"It's as big as the resection," Hernandez says. "You can see it on the scans, but it's impressive to actually look at."
Donahue separates healthy brain from the growth, the tuber that is to blame for most of the seizures Roberto had suffered in his young life. It is lifted out and placed in a tray.
"That's the main culprit," Hernandez says.
Seeing the size of the growth and the damage it had wrought, Hernandez and Donahue are even more confident that Roberto will get a reprieve from his seizures. As the surgery winds down, Donahue places more electrodes above the resected area and his team begins to close.
The next day, if Roberto's seizures indeed have ended, the surgeon will perform one final operation to remove the grids from Roberto's brain. The boy will soon be on his way home. Roberto might not have to suffer the same fate as Tighe Donahue so many years before.
Now, the wait
Donahue finds Leticia Gutierrez in the waiting room, surrounded by tired relatives who have been with the boy's mother on the three-day vigil. But now the worst is probably over. Both the tuber and a damaged piece of Roberto's brain are gone. He has come through the surgeries just fine, and the result will probably be a period of calm and peace for a boy who has never really known either.
"I'm really hoping that this is going to help," Donahue says, sitting next to Leticia. "We had the electrodes so we know where the seizures came from, so I think there is a good chance."
"God willing," Leticia says.
"We'll see what he does back in the ICU tonight," Donahue says. "You look remarkably well, considering what you've been through."
"It's been hard, but I've got faith in God," she says. "And I've got faith in your hands that you're doing a good job with my baby."
"We're doing our best, and he has really held up very well," Donahue says. "But we really need to finish this up."
Donahue hugs the mother and sets off down the corridor, headed to his next case. When Roberto wakes up that morning in the ICU, Leticia is by his side. The next several hours there are happily uneventful.
But then, late that evening, Roberto's body begins to twitch, his eyes roll back into his head, and his skin pales. Two more seizures follow in the hours to come. The resection has reduced Roberto's seizures from 20 a day to three, but they are still occurring, caused by a previously dormant tuber on the right side of the brain. That tuber is too close to the motor cortex and cannot be surgically removed.
"I was hoping it was over and done with," Leticia says. "No more surgeries, you know? But then he just started seizing. I cried that night. At one point, I snapped at the nurses, then I apologized. I was really hoping that would be it."
Donahue learns about the seizures early the next morning.
"The poor kid," he thinks.
The surgeon has one procedure yet to try.
"Okay," he thinks. "Let's go to Plan B."
Tim Madigan, 817-390-7544