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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