A sensation that most people take for granted is something 10-year-old Andrea Daeges, of Chanute, will never experience.
Because of short bowel syndrome, Andrea cannot digest food and thus cannot eat normally. She is constantly fed through a tube in her stomach.
With the inability to eat comes the inability to taste … with one exception.
Andrea will have her mother, Marcia Gustin, buy crackers or popcorn. She sits with a box of snacks on one side and a bowl on the other. She touches the snacks to her tongue and then discards the still whole piece of food in the bowl. She goes through this process just so she can experience the taste of salt.
While she can experience salty products, she will never know the taste of chocolate or candy because it would make her very sick, Gustin said
Andrea started fourth grade with Centre’s virtual school Tuesday. Because of health concerns virtual school was her only option.
For Gustin, the virtual school provided a safety net for homeschooling. Gustin started homeschooling Andrea last year. She had gone to public school for four years prior.
“First of all she was sick constantly. She was out two months at a time,” Gustin said. “They weren’t nice to her. It was negative. She would come home crying every day.”
Andrea was different than the other children in her class.
Andrea was born 12 weeks premature and with necrotizing enterocolotis, a disease that causes the lining of the small intestine to die.
A normal small intestine is more than 6 yards long; Andrea only has 32 centimeters, the rest of which was surgically removed after birth. Gustin said Andrea was near death. At the University of Nebraska-Omaha Hospital, Gustin chose to not have Andrea receive a colon transplant in favor of a liver transplant, which saved Andrea’s life.
In order to live, Andrea has a stoma, an opening in her abdomen with a Mic-Key button connected to a feeding tube. The small intestine is the primary organ that absorbs nutrients and keeps the body hydrated. Andrea wears a backpack that is constantly feeding her. The backpack is an obvious difference that drew negative attention from fellow students.
Andrea also has a central venous catheter line, on the left side of her chest, connected to the main vein leading into her heart. A central line allows nutrients and medicine to enter her blood stream.
“I feel like I’m not able to do some things,” Andrea said.
Indeed, Gustin must be extremely careful with Andrea. She cannot swim or play in excessive heat because of the central line. She cannot play in the cold because of an immune system deficiency, also the reason she was often sick and out of school.
Gustin and Andrea have made several trips to Omaha for medical appointments at the hospital, with another coming this month. The hospital has one of the top intestinal rehabilitation centers in the country, including a feeding clinic that could teach Andrea how to eat in a safe environment.
Gustin said they have been unable to enroll in the feeding program because her insurance company will not pay for it. Taking a plethora of medications, Gustin said Andrea currently costs Blue Cross and Blue Shield through payments to Gustin about $900 a day.
“I keep waiting for them to change their policy,” Gustin said.
Despite all of her problems, Gustin said Andrea is mature beyond her years. She only has moments where she breaks down.
“She will get frustrated sometimes,” Gustin said. “(She’ll ask) ‘why do I have to have all this stinking stuff?’”
Gustin responds: “Because God made you different.”
With much of her youth spent in hospitals, Andrea converses like an adult. In Omaha, she often greeted people almost like a hostess, Gustin said.
Even without communicating to Andrea the possible consequences of her unique medical situation, Gustin said the 10-year-old has an understanding of her mortality.
“She’s really close to God,” Gustin said. “She kind of freaked me out a couple of times. She’ll tell me she can see angels.”
One discussion sticks out in Gustin’s mind. Andrea told her mother, “If something happens to me, I’m going to heaven and you’ll be fine.”
“We’ve never told her, ‘you can die.’”
It is due to modern medicine that Andrea is alive. Gustin said that if Andrea was born when her brothers were born — they are 25 and 21 — she would not have survived.
“I questioned one time to God,” Gustin said.
“She’s brought nothing but pure happiness and joy.”
Andrea is still a 10-year-old about to start fourth grade. Gustin said she excels in most subjects — especially creative writing and science — but mathematics is a consistent struggle. Out of the classroom often with illnesses, Andrea missed some of the mathematics foundation at public school.
“We took a look at math questions yesterday and she started crying,” Gustin said.
Although math is a struggle and Andrea misses some of her classmates, Gustin said Andrea’s life has greatly improved since homeschooling started. Her health has stabilized and she has put on weight, a task that is extremely difficult with her condition.
Homeschooling has been the first step for Andrea to achieve a goal: “To eat and to be a healthy little girl,” Andrea said. “I’ll keep going no matter what.”