Cindy Mood was 20 weeks into her pregnancy when she learned learned that her baby Cyrus had arthrogryposis
“It feels like something is zipping inside me,” she told her husband Charles.About six weeks later, however, the movement completely stopped. Mood brought up the concern at a 20-week check-up appointment, which included a full anatomy scan.Her ultrasound tech immediately noticed an abnormality. “Zippy wasn’t opening and closing his fists,” Mood said.
She also serves as associate professor in the Department of Orthopedic Surgery at McGovern Medical School. “He was so uncomfortable,” Mood said. “Gravity was now pulling on all the joints that had been suspended in amniotic fluid for so long.” “Our physical therapy and occupational therapy teams in the NICU are well-versed to start stretching and splinting procedures,” Crawford said. “We needed to start getting the joints moving.”
There are braces Cyrus uses for different purposes. “We have bigger ones for when he is standing that help stabilize his knees,” Crawford said. “And smaller ones for sitting. We continue to work on getting his joints moving as best as they can for him.” Treating the upper extremities is almost the opposite of the lower joints. Gogola said. Instead of focusing on position, she hones in on mobility.
Once a joint gains passive motion, it will remain, Gogola said. Still, splints are required as children continue to grow, similar to wearing a retainer after orthodontics. Still, making strides requires tremendous effort from the parents. “Cyrus’ mom is amazing,” Gogola said. “She never misses a beat.”Mood is dedicated to finding all options available to best help her son.
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