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Instructor’s daughter overcomes recent struggles Libby Seline
Copy editor As she was heading into surgery Oct. 24, 17-month-old Jessa Jurgens looked lifeless. Her eyes were barely open. Her skin was sickly pale. She didn’t have her usual smile on her face. Her parents, PE instructor Stephanie Jurgens and Kyle Jurgens, looked at her and became nervous. It was difficult for them to see their daughter so lethargic. “I felt like [the surgery] was something that [had] to be done to change the state she was in,” Stephanie said. “[Her current state] was frightening with seeing how she was and the lack of energy or life she had in her.” She was taken to the hospital when her temperature increased from 99.5 to 103.5 degrees that morning. Doctors don’t know why she had this spike in temperature, but they thought it was possible her high temperature was a symptom of Meckel-Gruber Syndrome, a disease she was diagnosed with eight to ten weeks after she was born. According to Jessa’s geneticist, Dr. Lois Starr, Meckel-Gruber Syndrome is a genetic disorder that occurs when both parents are a carrier for a specific trait. This disease has caused Jessa to become blind and has negatively affected her liver and kidneys. Jessa was also born with a disease called hydrocephalus. Hydrocephalus resulted from Meckel-Gruber Syndrome and has caused her to have extra cerebrospinal fluid on her brain. Doctors put in a device called a shunt to stop the fluid before it could cause problems in Jessa’s nervous system. However, there are not many people who have Meckel-Gruber Syndrome because most babies with this syndrome die shortly after birth due to complications in the womb. “There are very, very, very few survivors of Meckel Gruber Syndrome,” Starr said. “Jessa is
truly a miracle.” For the first year of her life, Jessa was healthy. When she went to the hospital Oct. 24, Stephanie started thinking about the reality of this disease. In Oct., doctors discovered Jessa was having problems with her shunt. It wasn’t draining the fluid from the brain, which was causing it to build up. They attempted to repair Jessa’s shunt, but it stopped working again Oct. 27. She needed a second surgery on her shunt. She seemed better after the surgery, but she still was very tired. “Over the next couple of weeks, she wasn’t quite back to herself,” Stephanie said. “Her energy level wasn’t quite back. Her talking, smiling, laughing and just playing around wasn’t quite what it used to be.” Jessa’s lack of energy started to become worse. Stephanie decided she had to take Jessa back to the hospital Nov. 10 to run more tests and determine what had caused her to become so lethargic. Doctors discovered bacteria in her stomach called clostridium difficile was causing her to be fatigued and to have diarrhea. People are born with this bacteria, but it was causing problems for Jessa because of the amount of medication she had been given recently. Stephanie was relieved and surprised to hear Jessa only had a bacterial infection because Stephanie thought Jessa might have had more problems with her shunt, which frightened her. Kyle and Stephanie find difficulty in knowing what to do when Jessa is not acting like herself. There is not a lot of information about this disease, so the parents struggle to realize if Jessa should be taken to the hospital if she’s not acting like herself. “It’s also really hard watching her go through all of that,” Stephanie said. “She has to get poked over and over by needles…It’s just really hard putting her through that, especially if it’s not necessary. How do we know if it’s necessary or not? I definitely feel like this last time we did the right thing by taking her there, but it’s just hard.”
However, Kyle and Stephanie wonder whether Jessa’s recent complications have an underlying cause that doctors have not figured out yet. “With her syndrome, it’s so rare, we don’t know what to expect,” Stephanie said. “So, it could be a very long road, and this could be something that happens more than we’d like, but I’m hoping that’s not the case.” Although Stephanie wonders about Jessa’s future, she does not like thinking about the unknown. She chooses to think about how Jessa is 18 months old and still alive. “It’s hard to be negative when she’s such a fighter and a happy baby,” Stephanie said. “She really is mild-tempered and happy and easy to please. She means everything to me, and I feel like she was put in my life for a reason. She’s like the happiest, sweetest, purest thing I’ve ever known. She’s made my life complete in so many ways; I can’t even explain it.”
PE instructor Stephanie Jurgens holds and plays with her daughter, Jessa, outside Thursday, Dec. 4. Jessa suffers from Meckel-Gruber Syndrome. Photo by Mitch Francis
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FEATURE
“HE’S STILL THERE”
Freshman starts recovery process after life changing brain injury LIBBY S E L I N E EDITOR-IN-CHIEF
Freshman Gavin Christiansen’s fingers fiddle with the Xbox remote control Friday, Aug 5. He and his friends gathered at freshman Tyler Dovel’s house and were playing Guitar Hero. After over an hour of playing, the group was still not tired. Gavin was his normal self, full of energy and laughter. In the moment, Gavin snaps a picture of himself and his buddies. His bright blue eyes stare straight into the camera and his blonde hair stands straight up on the top of his head. A small smirk appears on his face. His friends smile goofily and their arms are wrapped around each other. Gavin captions the photo “goals” and uploads it to his snapchat story. Gavin marches upstairs to go to the bathroom. After a couple minutes, freshman Jacob Vincentini notices Gavin still isn’t back. Someone knocks on the bathroom door to see if Gavin is in there. No response. They opened the door to find Gavin’s body across the tile floor. Unconscious. Unresponsive. Dovel’s parents called 911 and started CPR. *** Gavin’s father, Brian Christiansen, drives from Council Bluffs to Children’s Hospital in ten minutes. He said he knew he needed to “get here as as soon as possible,” but nobody told him what happened to his son. “Did he take something?” “Did someone slip him something?” “Did he fall?” Brian runs into the hospital with his heart pounding furiously. He finds his wife, Sarah Christiansen, “hugging the life” out of their 10 year-old daughter, Lexi Christiansen. They arebawling. At the sight of them, the first assumption Brian made was that his once healthy 14 year-old son was dead. “What the f**k happened?” Brian yelled. “Where is he?” Doctors told him that Gavin had blood in his lungs and stomach, but they still don’t know what happened. They lead the family to Gavin. There’s a breathing tube in Gavin’s mouth and a doctor pumping a bag so Gavin could breathe. His black and white Under Armour shirt had been ripped off his body. It was his favorite shirt. A doctor announces the results of the CAT scan; there was blood on Gavin’s brain. He needs to be transported to University of Nebraska Medical Center Within five minutes, Gavin is lying in a gurney ready to be transported to UNMC. Upon arrival, he is rushed into surgery. “Wait!” Sarah shouts. “Can I at least give my son a kiss?” The paramedics stop the gurney, and Sarah leans down to give her son a kiss. Then the paramedics continued to wheel Gavin down the hallway leaving Sarah and Brian feeling helpless. “Why does this got to happen to him?” Brian said upon reflection of the event. “The kid ain’t never done nothing wrong in his life but get good grades. He’s the best freaking kid I’ve ever met in my life, and now he’s laying in a hospital bed fighting for his life.” ***
Hours passed by, but it felt like minutes to Brian. Time was a blur. Several tubes are sticking out of Gavin’s head and body to keep him alive. Sarah and Brian don’t understand. Days ago he was playing football in preparation for the season. A week ago he was on a family vacation. How did their son’s world fall apart in a matter of minutes? The doctors don’t know. They would still need a couple days to find out. They only knew Gavin came within minutes of dying. Gavin stayed in the hospital for days. Nobody left his side for 48 hours. He didn’t wake up. He didn’t move. No words came from his mouth. After those two days, doctors announced that Gavin had developed pneumonia, and they recommended he be put in a medically induced coma. Time stood still in those two weeks. Sarah and Brian can’t listen to the radio. They can’t watch TV. The only time they go home is to take a shower, and that only took an hour of their day. The rest of time is spent watching their son’s monitor and occasionally sleeping. Two weeks later, the doctors eased Gavin off the drugs that put him in a coma. He was awake, but his battle is just beginning. *** It is hard for Gavin to sleep through the night. His body can’t handle it. His heart rate would shoot up. He was sweating constantly. His bright blue eyes would pop open and then close just as fast. His body craves the drugs that were used to induce his coma and not receiving them makes Gavin miserable. Every once in awhile, Sarah watches him silently cry to himself. Doctors slowly ease Gavin off the drug, and after a couple of days he became less addicted but more exhausted. His brain needed to heal so he mostly slept. Doctors walk in and out of his room to monitor him. They still can’t say what caused the bleeding, but have told the family that Gavin technically had a stroke. Doctors suspect Gavin has a rare genetic disorder called arteriovenous malformation (AVM), which would have caused the arteries in Gavin’s brain to weaken. Any evidence of AVM would have been destroyed during the stroke. So, although there is no evidence to prove Gavin had an AVM, the doctors looked through Gavin’s brain to find other causes for a stroke but did not find any other plausible signs. However, Gavin’s brain needed to go through an intense healing process. He needed to have surgeries adjusting the amount of spinal fluid in his brain. Additionally, his motor skills and been severely affected by the incident. It became difficult for him to form words or walk. Gavin is aware, though. He remembers the night he was hanging out with his friends. He remembers the headache he got while he was in the bathroom. And then he remembers waking up in a hospital with his family by his side. He understands the doctors and his family. However, they don’t understand him. He can’t
talk. “[He’s] screaming on the inside,” Sarah said. “Nobody can understand [him].” As Sarah says this, Gavin nods. With the help of different communication tools, communicating became easier. Every day a physical therapist walks into the room at UNMC. Gavin dreads it. For the first five minutes of therapy, Gavin needs to be held down. His arms flail in the air and he pulls his bed sheets over his head. His parents worry about Gavin unplugging his tubes attached to him and struggled to help him. He eventually gets up and his therapist helps him walk. He shuffles along the hallway, and with help from others, he would be walking. Therapy only lasted 10 minutes, and as soon as his time ended, he eased back into his bed and slept. Before he went to bed he looked for his small plush football that his sister won for him. He squeezes it in his hand and makes sure his phone is in his pockets. Occasionally, he looks through his phone and reads texts people sent him. Knowing this, Brian texted him the night of Sept 7. Good night bud love u Gavin replied. Love u Brian smiled and calls his wife to make sure Gavin was the one actually texting. He was. This only reassured Brian that Gavin was doing better. “He’s still alive,” Brian said upon reflection. “And he’s in there. We know our 14 year-old boy is in there. We just gotta get him out.” *** Gavin was transferred to the Madonna Rehabilitation Hospital in Lincoln on Sept 8. As Brian likes to say, Gavin is out of the “danger zone,” meaning the hospital is strictly for therapy. It should be his home until Oct 27 when doctors estimate Gavin can leave. He will not be fully recovered by this point, and doctors say the process could be anywhere between six months to a year. In the meantime, Gavin rests and does different therapy exercises. On Sunday, Sept 18, Gavin sits in his chair surrounded by his parents and visitors. His favorite football team, the San Francisco 49ers, are playing. Gavin watches the screen intently. The room is filled with his parents interacting with visitors making conversations about football and Gavin’s progress. Ten days ago, he could barely hold up his head. Today he was tired but still smiling. Gavin interrupts the conversation and points at the screen to get Brian to watch the game. The whole room stares at the screen and rallies around the team. “Wanna switch blankets, bubba?” Sarah asks. Gavin nods. His red Husker blanket is exchanged for a gold and black “Niners” blanket. At the end of the day, Gavin and his family remember the Husker prayer. Just like the Huskers, Gavin strives for success. That prayer? “Day by day. We get better and better. A team that can’t be beat won’t be beat.” *Profane language is used in the content of this story
Above left: Freshman Gavin Christiansen poses for his football picture. Christiansen loves football and his favorite team is the San Francisco 49ers. Above Middle: Gavin Christiansen and sister Lexi Christiansen pose for their family photo. Above Right: Brian, Sarah, Gavin and Lexi Christiansen pose for a photo outside of UNMC. The family is hosting a spaghetti feed for Gavin on Oct 8 from 4-7 p.m. Photos courtesy of Sarah and Brian Christiansen