Archived Voice Articles
By Sally Jongsma
Professor Marv Wielard knows that students in his statistics classes often feel that what they’re studying doesn't really speak to their lives. In fact, Wielard comments dryly, “They think it’s dry as dust.”
So when Wielard heard that a member of his church, Dordt alum Cheri (Oostra, '93) Horstman, was participating in a clinical trial, he had an idea for helping students in his class understand the concrete ramifications of what they were studying.
Mark ('93) and Cheri (Oostra, '93) Horstman's son, Eli, will continue to be a part of the clinical study at Vanderbilt University until the age of two and a half. The Horstmans have nothing but good to say about the way the study was conducted and how they were treated as participants.
Data collection is one of three main areas Wielard covers with his students, and clinical trials are a main area of focus. So he asked Horstman to speak to his students about her experience as part of a clinical trial. The conversation not only gave students a better sense of why clinical trials are important and why they need to be so carefully executed, it also helped them understand that gathering data for such studies affects people’s lives very personally.
Wielard’s colleague Dennis De Jong, who teaches a basic mathematics course on a variety of topics, including statistics, also invited Horstman to his class.
“It was just excellent,” De Jong says. “In the class before, I had talked about what a randomized experiment is. Cheri explained it so well.”
“A clinical trial involves so much more than popping a few pills—as they are sometimes portrayed on television,” says Horstman. And participating is not something to be taken lightly. “Participants are almost always in a fairly dire situation,” she adds. “You feel very vulnerable. It’s a very personal thing.” Despite that important element, Horstman talked primarily about the logistics of the trial. It’s still too early to talk about the personal wrestling and the range of emotions that accompany such an experience.
Horstman and her husband, Mark (’93), were in the fifth month of pregnancy when they learned that their unborn child had spina bifida. Their doctor alerted them to a national study being done to determine whether pre-birth surgery is beneficial for children born with spina bifida. The procedure was not a cure but an attempt to give children a better quality of life. The hypothesis was that the surgery would stop hydroencephaly in the uterus and after birth, eliminating the need for implanting a shunt to drain fluid. Shunts invariably cause problems later.
There was also evidence to suggest that the surgery might improve the child’s ability to walk and his bladder control—two typical problems for children born with spina bifida.
Cheri Horstman described the steps they had to go through in making the decision to participate. They first needed to be screened to see if they qualified for the clinical trial, and then had to decide whether or not they should participate.
They did opt to become part of the study, but not without a great deal of research, reflection, and prayer. The decision meant they had to go to Nashville for tests. If they were randomly selected to have the surgery, Cheri would have to remain in Nashville for the duration of the pregnancy, with a caregiver present the whole time. They were selected.
The Horstmans admit that although they initially considered participating in the hope that it would help their child, in the end they decided to join the study to further knowledge about spina bifida.
“All of our children now have a greater chance of having children with a neural tube defect,” Cheri says. “We were asked repeatedly whether we were putting our hopes on the benefits of the surgery. In the end, we could honestly say 'no, that is not the reason we are doing this.'” They came to realize that their hope was in something much more sure: God’s grace and love for them and their unborn child.
Cheri underwent in utero surgery in her sixth month of pregnancy. Eli was born on April 17, the day after Easter, at thirty-seven weeks. Holding off that long was an answer to prayer, even though Cheri was more than eager to be home after twelve weeks in Nashville. In one sense, the results were disappointing: Eli needed to have a shunt put in four months after he was born. But the Horstmans are not sorry to have made the decision they did. “We had access to people who know more about spina bifida than anyone in the world, “Cheri says, adding that the medical staff was fabulous, “the best of the best.”
Cheri is sure that it was hard for students without family responsibilities and children of their own to understand all they went through, but, she wants them to know that behind all of those hard cold numbers, are real, often hurting people who make these studies possible and who benefit from the results.
As Cheri wrote in a final e-mail from Nashville to the many family members and friends who supported them throughout the months: “I feel like our long haul is ending, but I don’t really know what other long hauls God has in store for us. But that’s okay. God is walking with us. He will prepare us and the final destination is so worth the walk.”