The fight of her life
Last spring was a time of such promise for Erica Van Zuidam, a beautiful, athletic young woman finishing her first year of college.
But in a few short hours, she went from being a normal college student, hanging out at the pool with her friends, to fighting for her life. Bacterial meningitis, sometimes called the dorm disease, nearly killed her. It took her hands and feet.
Erica spent weeks unconscious in the hospital. She underwent three surgeries and months of therapy. She learned to walk again.
It formed an even tighter bond between her already close-knit family, who found something to laugh at through some of the worst times of their lives.
Erica's faith in God, her positive attitude and her determination to be independent again have led her from her hospital bed through therapy to preparing to return to the University of Illinois this fall.
* * *
Finals week, May 2005: Erica Van Zuidam had survived her freshman year at the University of Illinois. She made it through her calculus classes, she was planning for next year, and she was enjoying the last days of school with friends.
But would she survive the disease that struck suddenly and left her on the brink of death?
* * *
The Tuesday of finals week was warm and sunny, and Erica was halfway through her four exams, so she headed to the pool with friends. She took her math book, but she didn't open it.
She began to feel queasy and achy, as if she had the stomach flu. In the late afternoon, she went back to her dorm room to try to study and maybe take a nap.
Her head was pounding. She felt really hot, then really cold. She fell asleep, then woke up in the middle of the night, throwing up. Now I know I've got the flu, she thought. Now I can't study for math.
She threw up over and over, until the acid in her stomach was the only thing coming up. Her stomach was cramping, and she couldn't straighten out her body.
Then she noticed purple blotches on her hands.
Scared, she went down the hall to her friends' room. They called the Carle patient advisory nurse, who told them to bring Erica to the emergency room.
She barely could walk out of the dorm, crouched over with stomach pain, and she curled up in the back seat of her friend's car.
"I never felt that pain in my life," she said. "I was breathing really, really heavy. My heart was pounding really, really, really, really fast. I remember getting all hooked up.
"They were real busy, real fast," she said of the emergency room doctors and nurses.
The E.R. staff at Carle Foundation Hospital recognized right away that Erica had meningitis. She had the symptoms – severe headaches, fever, muscle aches – and the telltale purple blotches, caused when the local blood flow starts to shut down.
They inserted a long needle between two vertebrae in Erica's lower back, into her spinal canal, and drew fluid into the needle. The spinal tap confirmed she had meningococcemia, one of the most severe forms of bacterial meningitis. One that can be particularly lethal. She doesn't know how she got the disease.
Erica's memory after that is hazy. She remembers seeing a family friend, who works at Carle and came to check on her. She's not sure if she remembers seeing her parents.
She recalls nothing else of the next seven weeks.
"Pretty much the bad part of the hospital I don't remember," she said. "I just see the scars of it."
* * *
Erica was a top student in high school who worked hard to graduate ninth in her class of 380 at Thornton Fractional South in Lansing. She was athletic, playing volleyball and running the 800 meters for the track team.
Her older brother, Nathan, already was at the UI, and Erica had her heart set on going there. She loved how big and exciting the university was. She liked that it was hard to get into, so she felt a sense of accomplishment when she was accepted.
Math came easy to her in high school, so she chose that as her major. She wanted to teach high school calculus and coach volleyball.
She moved into Weston Hall and quickly became friends with a group of girls on her dorm floor. The friends went to the pool together, to bars, to Nathan's apartment. They gathered every Thursday night to watch "The O.C." – "There's no talking allowed when we watch that," Erica said.
She joined the InterVarsity Christian Fellowship and began playing volleyball with people she met through the organization. She started going to a Bible study group in her dorm and attending Twin City Bible Church in Urbana.
Her faith is an important part of her life, even more so when she was on her own at college. During winter break, Erica made a profession of faith in her church at home – a public acknowledgment that she intends to live her life as a Christian.
"When I'm on my own, I really see how important it is to have that," Erica said. "I could do whatever I want when I go to school, but then go to church with my family when I'm home and put on a front. I decided I'm not going to do that.
"I live my life for Christ. I'm not going out every weekend and get drunk, I'm not going to go sleep around. I have more to my life than that. What the Bible says is what I live by."
She studied hard and worried about doing poorly in her calculus classes.
"I was a nerd. I'd put in, like, 20 hours for an exam," Erica said. "Math was so stressful.
"I understood it all. I would totally freak out when an exam would come, but I did well."
To relieve the stress, Erica went to the gym nearly every day to lift weights and run or use the elliptical machine.
As her freshman year was coming to a close, Erica made plans to stay in her dorm and live in a triple room with two friends. She had taken her Spanish final already when she went home for Mother's Day weekend.
Erica left around noon Monday to drive back to the UI and take a psychology final that evening. After that, she'd have finals in speech and calculus, and then she'd head to northern Michigan for a weeklong retreat with InterVarsity Christian Fellowship.
* * *
Janice Van Zuidam answered the home phone at about 6:30 a.m. Wednesday morning. A nurse on the other end told her Erica might have meningitis.
"I was just scared. Meningitis is something in third-world countries," she said.
Janice asked the nurse if they could wait to do the spinal tap until she and her husband Tim got there. The nurse said no.
Tim, an insurance agent, was already on the golf course with friends when Janice called him. As he drove back to their house, the skies turned pitch black with storm clouds.
"I flew right back home," Tim said. "We just jumped right on the expressway and drove 100 mph to Champaign."
Before they left, Janice called her mother for help in getting their youngest child, Jamie, to school, and she called their church to get a prayer chain started. Then she talked to Jamie.
"I said, 'Jamie, Erica's really sick, she's in the hospital, she might die,' and then I sent her off to school. How could I do that to that poor kid?" she asked.
The trip to Urbana was a blur for Tim. He didn't think of much, except driving as fast as he possibly could. He and Janice still didn't know how serious Erica's condition was. They had driven just a few miles from their house when Tim's cell phone rang. A doctor told them Erica had bacterial meningitis and she might not live through the day.
"You just kind of lose it," Tim said.
Janice began sobbing when he told her the news.
"I couldn't even sit," she said. "I wanted to crawl out of my skin."
Tim was numb. The two drove mostly in silence, in a state of shock and panic.
By the time they got to the hospital, Erica was in intensive care.
"She said her legs were hurting. She was squirming back and forth in the bed," Tim said.
Erica talked about missing her retreat and worried about her math final. Her parents talked to her for a few minutes, then the doctors took her away to put a tube into her throat to help her breathe before her lungs stopped working.
Even then, it was hard to grasp the seriousness of Erica's illness.
This is not happening, Janice thought. She is really sick, but she'll be OK later on today.
But that afternoon, an intensive care nurse told Janice to get her other children to the hospital.
* * *
The phone call woke Nathan Van Zuidam up about 9 a.m. He knew from his father's voice it was something serious. Tim told Nathan his sister was sick and might not make it to the end of the day. Nathan sat back on his bed, sobbing.
At his mother's urging, he took his last final a few hours later. He looked at his roommate, seated next to him, and said, "This is meaningless," then finished it as fast as he could.
He went to McKinley Health Center for antibiotics, along with other friends who recently had been around Erica, and then headed for the hospital to be with his family in Erica's room.
"She was so bloated and huge. She was enormous because of all the fluids in her," Nathan said. "I didn't know what to do. I didn't know who to look at."
* * *
Jamie prayed for Erica on her way to school that day, but she didn't know how serious her sister's condition was. That afternoon, though, when she was in gym class and saw her grandmother walking toward her down the school's hallway, her heart started pounding.
When her grandmother said she had to go see her sister in the hospital, Jamie burst into tears. She nearly blacked out in the locker room while changing her clothes.
* * *
Erica's disease progressed very fast, said Dr. James Gregory, the hospital's medical director for critical care services.
"She went from talking to me to unconscious, unable to breathe, with her kidneys shutting down, within four hours," he said.
Erica was transferred quickly to the surgical intensive care unit. The bacteria in her bloodstream were attacking the membranes around her brain and spinal cord, and her white blood cells were rushing after them, causing massive inflammation and a drop in blood pressure.
The doctors and nurses were having problems keeping an adequate blood supply going to her organs. She was having trouble breathing, and there were signs of possible liver failure. She was deteriorating before their eyes.
"Our only hope of saving her was to get antibiotics in rapidly," Gregory said. "If there's a delay in antibiotics, it doesn't matter what we do."
The medical staff never left her bedside for the first 26 hours.
* * *
The disease was causing clots in the small blood vessels everywhere in Erica's body. Her fingers and toes were losing blood flow, and parts of her ears, nose and face were turning black.
All her major organs were shutting down: kidneys, lungs, circulation and gastrointestinal systems.
Once the clotting agents in the bloodstream were used up, Erica started hemorrhaging. She was getting plasma to put the clotting factor back into her blood, and medicine to prevent bleeding.
Erica was kept on pain medication and a sedative to make her comfortable and make it easier for the medical staff to treat her. They used a chemical to paralyze her for the first day and a half, to relax her chest muscles and make it easier for her to breathe.
Doctors gave her massive amounts of fluids and medication to keep her blood pressure up. Because fluid was collecting in the chest cavity around the lungs, they also put tubes in each side of her chest to drain the fluid and allow her lungs to expand.
They put a 3-foot-long catheter in a vein underneath her collarbone to measure how well her heart was pumping blood. They also put in an arterial line to measure blood pressure, a catheter for her bladder and another for continuous bedside dialysis. She was given steroids to decrease the swelling in her brain and the toxic effect of the bacteria.
"We had about 24 hours to get her stabilized," Gregory said. "I thought if we didn't get ahead of it in the first 24 hours, she was going to die."
During that time, the medical staff was addressing a new problem or changing Erica's therapies every 10 to 15 minutes, trying to keep her blood pressure up and prevent the clotting.
Erica had fevers of up to 106 degrees from the inflammatory response of fighting off the bacteria. Doctors used a cooling blanket to keep the fever down and reduce the risk of brain damage.
* * *
After the first 24 hours, things started to slow down a bit.
"She still had a chance of dying," Gregory said. "Then it became an issue of, we have a 19-year-old girl who's going to lose potentially a portion of her face, part of her hands and her feet. How devastating is that? There was the potential for long-term dialysis.
"We had some very frank discussions with the family about what Erica's wishes would be. Trying to predict that with a 19-year-old is not easy. We wanted them to understand she would not get out of this without fairly significant changes. I thought it was important for them to hear this straight out."
Other medical personnel working on Erica were more optimistic about saving her extremities, but Gregory told the Van Zuidams Erica would lose both hands, her right foot and part of her left foot.
"The family was tremendous," he said. "They wanted to know everything, even if it was hard or it hurt. That's rare. Doctors have a tendency to sugarcoat things."
Gregory didn't know then if Erica would have brain damage. She was still unstable, and the doctors could have withdrawn support and let her die.
She had been in the hospital a week when Gregory asked family members if they wanted to continue treatment. As soon as he began talking, Janice walked out of the room. She couldn't hear any more.
Tim was surprised at the question – but sure of the answer.
"That's not even an option," he told Gregory.
At the time, Gregory wasn't sure it was the right choice.
"They knew the worst-case scenario," he said. "(Tim) knew what decision he was making, what he would subject her to.
"They came to the conclusion that Erica could handle this. This family was very close, and they knew her personality well enough, they made the right choice."
* * *
Tim slept every night in Erica's room, and Janice stayed at Carle's guest house. The family spent weeks sitting in the waiting room at the hospital with other families. They got to know one woman well enough that Tim attended her husband's funeral when he died.
After Nathan and Jamie first saw Erica in the hospital, they couldn't go back into her room for several days. Janice had a hard time as well. But they stayed with Erica.
"The first couple weeks, she would just lay there hooked up to a zillion tubes, and you would look at all those numbers," Janice said. "Then you learn what the numbers mean."
Nathan and Jamie sat by Erica's bedside and talked to her.
"Erica, you have to get better. I don't know what I'm going to do if you're not around anymore," Nathan would say.
Jamie told Erica she loved her.
"I just cried a lot of the time, though," she said.
The family received frequent updates. Everything the doctors said seemed so negative to Janice. Her stomach would drop whenever the doctors came to talk.
"You go and filter stuff out and come tell me," she told Tim.
* * *
Tim kept family and friends notified about Erica's condition on a Web site, which he updated sometimes several times a day.
Every night, Janice wrote about Erica's ordeal in a diary, from the time Erica was hospitalized until shortly after she came home. She hasn't opened the diary since she stopped writing in it.
"I'm not sure I want to relive it again," she said.
* * *
Within the first week, doctors knew Erica would live. But even after she stabilized, they didn't know if she had brain damage.
About two weeks after Erica entered the hospital, she had a tracheotomy so the breathing tube could be removed. A feeding tube was inserted. Doctors put in a more permanent line for dialysis a week later.
"That makes it sound so permanent. That would kind of suck the life out of you," Janice said. "Each thing they did, I was afraid it was going to be permanent."
Erica began relying less on the ventilator and breathing more on her own. As the doctors gradually lowered the level of sedatives, she began responding to her family, opening her eyes and smiling at them, and shaking her head in response to their questions.
Erica's hands and feet were wrapped in burn dressings to protect her skin. Sometimes her skin oozed or bled because of all the fluids in her and the lack of clotting agents in her blood.
Her fingers were shriveling because of the lack of circulation.
Nurses scrubbed her hands and feet twice a day to remove dead skin and prevent infection, and they put creams on them and changed the dressings.
"She was sedated, and we gave her pain medication, but it always seemed like a brutal thing," said Beth Grammer, a registered nurse with the surgical intensive care unit who cared for Erica during her 12-hour shifts. "It's needed. It looks so painful. I'm so glad she doesn't remember anything. It's just hard to do that to somebody."
A plastic surgeon saw her every day to assess her skin.
Gregory was straightforward about his belief that Erica would lose her hands and feet. But another doctor, whom the family called Dr. Happy, was always telling them things would be OK. It was a message Janice needed to hear.
"I don't care if it's false hope," she said. "You need a little bit of hope. I couldn't accept what (Gregory) told us at first. I was praying we were going to get our miracle."
"The miracle was that I was alive," Erica said.
"I know," her mother replied. "I wanted another one."
But when Erica finally woke up, her hands were black and cold and hard. Her fingers were curled under, and she couldn't move them. They looked like the hands of a mummy.
* * *
Erica faces amputation of her hands and feet – and learns to be independent again.