Siblings support each other through the daily challenges of fighting a chronic disease.
By Kaitie Marolf
Berne and Maren advocate for children’s health care in Washington, D.C., in June.
After spending the afternoon swimming with friends, 10-year-old twins Berne and Maren arrived home, and their mom, Stacy Van Gorp, immediately handed them generous helpings of Chex Mix. “We have to make sure they get enough calories,” she says, “especially after exercise.” Both children have cystic fibrosis.
Throughout her pregnancy, Van Gorp says everything progressed normally until both kids stopped moving at 32 weeks due to bowel obstructions. After visiting her doctor, she was referred to the University of Iowa Children’s Hospital in Iowa City where a medical team tried to prolong the pregnancy long enough to help the kids’ lungs develop further.
Despite this, the twins were born just after midnight: Maren one minute older than Berne. Berne immediately had surgery to remove part of his bowel and Maren had a similar surgery a few days later. Berne was in the NICU for 58 days and Maren for 63.
Growing up, Berne struggled with bowel obstructions and was last hospitalized at age 7. When she was 4, Maren contracted pseudomonas aeruginosa, a bacteria that chronically infected her lungs. She was hospitalized so the medical team could see if antibiotics delivered by IV would address the issue, but the attempt was unsuccessful.
Working against a chronic disease
With Maren’s chronic lung infection, she has to take an inhaled antibiotic twice a day, every other month. This is in addition to the 308 pills she takes every week. Berne takes about 250 pills per week. To prevent the mucus in their lungs from getting thicker, they have to use a nebulizer twice daily for 30 minutes each round, coughing every five minutes to loosen it. “It’s not a chronic illness, it’s a relentless illness,” Van Gorp says. “If you don’t work at it every day, the disease will work against you. That can be terrifying and highly motivating.”
They have prescriptions for the amount of exercise they need daily. To help with this, both kids play soccer and golf. Berne also plays hockey and Maren does hip hop dancing. “With golf, we justify it by making them run after the balls,” Van Gorp laughs.
The exercise necessitates higher calorie intake. Their bodies work harder than an average person, and they struggle with digestion, so they have to take in twice the amount of calories as a person of similar age and size. In a year and a half, Berne increased his BMI from 20 to 45 with a constant intake of calories, including large amounts of chocolate milk and an open order at the school which allows him to access as much food as he wants. “It’s a part time job in itself just keeping weight on the kid,” Van Gorp says. Maren has a G-Tube and receives an additional 1,000 calories every night. Despite this, her BMI remains at 20.
Chris Dennison, the twins’ father, says time management is the family's greatest challenge. “To get in 30 minutes of therapy and 15 of inhaled medications every day, to exercise daily and make sure that they can do typical kid activities can be a challenge,” he says. “Then there’s missing school to go to the clinic and trying to fundraise. Fitting it all in and keeping your priorities straight is not easy.”
Although managing their needs can be a challenge, their parents have encouraged both kids to take responsibility for their own health, something that Iowa Children’s is working to push hospital wide with all patients. “Relative to other kids with cystic fibrosis, they do things more independently than some kids their age,” says Tim Starner, M.D., director of the Cystic Fibrosis Center at Iowa Children’s. “They do their treatments most of the time and are responsible for them. They take an active part in managing their own disease.”
Why cystic fibrosis is an isolating condition
Unlike many organizations, cystic fibrosis support groups cannot arrange events for people with the disease to get together. Because their lungs are easily infected, it’s crucial that people with the disease are not in close contact with others who have the same diagnoses.
This helps them avoid contracting bacteria that are adapted to cystic fibrosis lungs and resistant to antibiotics. “Nobody is going to understand what it’s like to be a kid with the disease except other kids with the same thing. Because they are related, Berne and Maren are an exception. The twins try to reduce cross-contamination risks by not sharing utensils and avoiding close contact while sick.
To combat the feelings of isolation that come with the condition, people with cystic fibrosis connect online, and the family works to raise funds for the cause—raising about $25,000 this year. Van Gorp and Dennison serve on the Cystic Fibrosis Clinic Advisory Council and the hospital’s family advisory council, making sure hospital leadership is aware of the needs of cystic fibrosis patients.
Having access to a research facility like Iowa Children’s also allows them to participate in clinical trials from around the country. “We sign up for any trials we can,” Berne says. “They help.” Dennison says in many of the research cases, the benefit will come in the future. “It feels good to know we are contributing and what our kids are doing could help other families,” he says.
When both parents carry a recessive cystic fibrosis gene, there is a one in four chance that their child will get the disease. For fraternal twins to both get it, there is a one in 16 chance. “They were unlucky in that way,” Van Gorp says. “There is nothing good about having both of your children have a chronic disease, but if there is a silver lining it’s that they have each other and understand what the other person is going through.”