'Mom, my head hurts.' Then came a 7-hour emergency brain surgery.
INDIANAPOLIS — The brain surgery was supposed to be an orderly one.
Kristi Edwards and her teenage daughter had scheduled it a month earlier. Instead, after midnight just hours before the surgery was to take place, Edwards found herself in a mostly empty hospital watching as her daughter writhed in so much pain, it was unbearable to watch.
Five people circled Sarah Faley’s bed, waiting for the neurosurgeon to arrive at Ascension St. Vincent Hospital in Indianapolis. A nurse practitioner put a clipboard in Edwards’ hands and asked her to sign.
“She said, ‘We are going to try to save your daughter’s life,’” Smith said. “It was the moment when I realized that this just went from a scheduled surgery to an emergency; my kid may not make it.”
Minutes later, a backpack on her back and gym shoes on her feet, Dr. Jodi Smith rushed into Sarah’s room. She pulled up the teen's most recent brain scans, rubbing the teen’s head, trying to calm her as she studied the images, not liking what she saw.
Just then, Sarah, then 16, vomited and Smith didn’t hesitate.
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Smith grabbed the bed on which Sarah lay and said, "We’re going right now."
“Dr. Smith didn’t wait for any help,” Edwards recalled. “The nurses are following her and Dr. Smith is single-handedly pulling her bed down the hallway.
“Then they vanished behind these doors,” she said.
A seizure, a mass on the brain
Only a month earlier, neither Sarah nor Edwards had any concept of the danger lurking in her brain. Sarah was just happy to have her long-coveted driver’s license in hand.
The second day she could do so legally she drove herself to her lifeguard job and then met some friends at the mall to shop. By the time she pulled into the driveway that evening, her mother and stepfather were heading out, running late.
Something, however, led Edwards to get out of the car and follow her daughter into the house. She immediately noticed something was wrong. Sarah had a sweatshirt slung over her arm that Edwards had never seen before and when she asked her where it came from, Sarah just shrugged and said she did not know. Nor could she answer where in the mall she and her friends had gone or other simple questions.
Maybe she was dehydrated, Edwards thought, or could she possibly be drunk?
“I asked her if she had been drinking,” Edwards recalled. “The normal Sarah would have been totally offended. She sat there, saying 'no, no I haven’t been drinking.'”
Now, Sarah can remember feeling a sense that her consciousness was receding. She can’t remember much about her drive home though she does remember the discussion about the sweatshirt.
“I weirded myself out,” she said.
Sarah headed to the bathroom, where she felt chilled and called for her mother and stepfather and asked for a towel. After that, she said, she remembers nothing.
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As her parents watched in horror, Sarah curled into a ball and her eyes rolled up in her head. Whatever this was, Edwards knew she had to call 911 immediately.
When they reached the emergency room in a Fort Wayne, Indiana, hospital, a brain scan revealed a mass on her brain. Sarah, the doctors said, had had a grand mal seizure because of a bleed in her temporal lobe. The doctors recommended she be immediately airlifted to Riley Hospital for Children in Indianapolis, where a specialist could assess the situation.
As the hospital staff started bringing her upstairs to the helicopter pad, Sarah was throwing up, slipping in and out of consciousness. One minute she could see what was going on, the next she was unconscious, leaving her with “these weird flashes of images.”
At Riley, doctors examined her and said she would need surgery within the next few days. They warned that afterward she might lose the ability to walk or talk.
Both Sarah and her mother were stunned. Just one day earlier she had been perfectly healthy. Now they were hearing her life might be forever changed. Edwards decided to get a second opinion and a friend told her Smith was the best.
Smith was playing softball that afternoon when she received a text from a St. Vincent executive, asking her to take a look at Sarah’s scans. She downloaded the images and right away knew that Sarah had not actually experienced a neurosurgical emergency and the surgery could wait. She offered to see Sarah in her office a few days later and do a full work-up.
When she saw Sarah, she diagnosed her with a cavernous malformation, a condition that she likely had had for years if not her entire life. She had clusters of tiny abnormal blood vessels that resembled a bunch of closely bundled grapes filled with blood. If one of these grapes pops and bleeds that can lead to a seizure.
Many people may have this condition without realizing it, as they bleed at a rate of less than 1% a year. However, once a person has a bleed, that risk increases. Smith took a look at Sarah’s and recommended surgery a month later.
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Going down pretty quickly
For the next month, Sarah, normally energetic and outgoing, was subdued, perhaps as a side effect of the anti-seizure medicine she took.
She returned to school but afterward she would get home and just lie in her bed. Not only was she exhausted, she was also thinking about the major surgery awaiting her in Indianapolis. Still, there was an element of relief when she thought about the procedure: at least it would be done.
The family headed to Indianapolis the day before the surgery. All day Sarah seemed extra tired and off, Edwards recalled. She figured her youngest daughter was just nervous about the surgery.
After dinner they returned to the hotel and Sarah went to shower. When she came out, she said, 'Mom, my head hurts.' Edwards reassured her, saying she was probably just nervous about the next day and should try to sleep. Then Edwards went into the bathroom and prayed about it, not sure what to do.
Sarah knew something was wrong. The pain was far worse than when she had had the first bleed and was concentrated on the left side, the side where the cavernous malformation lurked.
When Edwards came out of the bathroom, she found Sarah rocking back and forth in bed, gripped by pain. Then her left eye started to water.
“I said we’re taking her right now,” she said.
They made the short drive to the hospital and Edwards ran in with Sarah in a wheelchair, telling the receptionist, I believe my daughter’s brain is bleeding. She needs to be seen right now.
As they sat in the lobby, Sarah’s hands started balling up, a symptom Edwards remembered from that first seizure. She called for help, starting a flurry of movement that ended in just minutes with Smith rushing Sarah down that long hallway.
Smith knew that Sarah’s life was on the line. That cavernous malformation, the one she had seen just a month earlier, had suffered a much bigger hemorrhage, a rare event for such a condition. The relatively simple surgery she had anticipated would now be much more difficult as Sarah’s second bleed was much worse than the first.
"She was going down pretty quickly,” said Smith, director of pediatric neurosurgery at Peyton Manning Children’s Hospital and a neurosurgeon at Goodman Campbell Brain and Spine. “Truthfully had she been in Fort Wayne, I don’t think she would have survived that hemorrhage.”
About seven hours later, nearly twice as long as the surgery would have taken had Sarah not suffered a second bleed, Smith had removed the malformation, which sat perilously close to Sarah’s speech cortex.
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The first thing Sarah recalls is waking up asking for her phone by moving her pointer finger. A big bandage wrapped her head and she wondered what how much hair remained underneath.
Sarah's getting better
Her recovery went amazingly well. She had one session with a speech therapist, who asked her to say some phrases. She passed with flying colors. Same thing happened with a physical therapist.
For a while Sarah didn’t realize just what she had gone through, how close to death she had been. When she returned to school, three weeks after the surgery, people asked her about it and she would tell them, downplaying what had happened so she did not worry them.
“It was weird. It felt like a dream,” she said. “Did this really happen? Is this real?”
A month after her surgery, Sarah was back at work, teaching kids how to swim. Three months later she was lifeguarding.
Now, almost a year later, Sarah, 17, can do everything she could before. She follows up periodically with Smith to make sure there are no other lesions.
Had Sarah stayed in Fort Wayne the night before her surgery, had her mother not taken her to the hospital when she complained of that headache, she would likely not have made it, Smith said.
“Thank goodness she was already down here. Everything just worked out,” Smith said. “All the stars were aligned. It’s probably divine guidance.”
Follow Shari Rudavsky on Twitter: @srudavsky.