“Our world turned upside down on Aug. 4, 2011,” says Heather Micek. That’s when she and her husband, Jason Micek, learned their twin girls would be delivered that day. An ultrasound revealed the girls had twin-to-twin transfusion syndrome, a condition that can be life-threatening to unborn babies. “I had no time to cry or process what was happening.”
Kaidyn and Keatyn were born weighing 1 pound, 13 ounces and 1 pound, 8 ounces respectively. When the girls were three weeks old, an ultrasound of Kaidyn’s brain revealed that several areas associated with movement had died. She would likely develop some form of cerebral palsy. Tim Feyma, MD, a Gillette neurologist, first shared this news with Kaidyn’s parents.
“He’s one that will tell you the truth,” says Micek of Feyma. “It might not be something you want to hear. But he gives you what he knows. We’ve always loved that quality about him.”
Understandably, the news devastated her family. “I want her to be OK. I want to take this away from her. She doesn't deserve to have something wrong with her,” wrote Micek on the girls’ CaringBridge page.
Turning Anxiety into Energy
The Micek family followed Feyma to Gillette, where doctors continued to monitor Kaidyn’s development throughout the months and years. She began receiving Botox injections to ease her tight muscles—a symptom of cerebral palsy—at three years old. She needed up to 20 injections every three months. “It’s very hard for parents to see that,” says Micek candidly. “You don’t want to take your kid in, but you know you have to because they need it.”
At age 4, Kaidyn’s Gillette team recommended selective dorsal rhizotomy surgery. “Kaidyn has triplegic spastic cerebral palsy, which means both of her legs and one of her arms are affected,” explains Feyma. “A rhizotomy seemed a more permanent way for her to make better gains and avoid a lifetime of injections.”
But because Kaidyn had developed anxiety surrounding medical procedures, her family decided to delay the rhizotomy and instead focus on physical therapy. Kaidyn also began play therapy at Gillette to create positive associations with hospitals. “I believe the play therapy group softened her medical fright and helped her focus on using her energy for recovery,” says Feyma.
Getting Stronger for Baby Brother
One year later, Kaidyn underwent rhizotomy surgery on December 14, 2016. Her mom calls it a blessing that they waited. “She has come so far in a year. Everything happens for a reason.” Micek also points to another blessing—she is expecting a baby in March. Talking about the baby motivated Kaidyn during her six-week hospital stay and continues to drive her in outpatient therapies. “She’s excited to be a big sister,” says Micek. “She wants to get stronger so she can crawl, because then can teach her baby brother how to crawl.”
Kaidyn’s drive became evident to her family long before her rhizotomy, however. For example, she resisted using assistive devices like her wheelchair, requesting instead to walk upright, like her twin sister, with help from her parents.
She even “walked” into the operating room before her rhizotomy, assisted by her dad. “Who knew that a 5-year-old would have the determination that she has?” asks Micek.
Physical Therapy, Kaidyn-Style
Full recovery from selective dorsal rhizotomy surgery can take a year, if not longer. During that time, children like Kaidyn continue to improve their strength and mobility through rehabilitation therapies and exercises at home. Kaidyn, for example, receives physical therapy three times each week. Her family drives more than an hour from their home in Wisconsin for sessions with Kaidyn’s favorite therapist, Janna Neher. Kaidyn builds skills while playing Disney princess games and listening to her favorite song, Whitney Houston’s “I Wanna Dance With Somebody.”
Although it’s still early in her recovery, Micek and her husband can already see improvements. She can “bridge” her body (raise her pelvis up while lying flat on her back) and bend her legs and knees in ways that weren’t possible before surgery.
Kaidyn’s parents noticed something else, too: her newfound level of independence. “‘I can do it!’ could be her motto,” says Micek. “Being around other kids like her gave her extra drive. I’m so proud of where she’s at. It’s like my baby grew up after a four hour surgery.”