written by: Susan Lacke photos by: Adam Finkle
The smallest fighters beat the biggest odds.
Kadence Joy: Turning Fear to Joy
Leanne Joy was assured her overnight hospitalization at Logan Regional Hospital was merely a precautionary measure. Her preterm labor pains at 35 weeks of pregnancy were concerning, but the doctor was confident he could stop them. In the morning, they’d do a quick ultrasound to check on the baby, and Leanne could go home to her husband, David, to rest.
“I went in to get my ultrasound at 9 in the morning,” Leanne recalls of the procedure. “And the ultrasound tech kept asking me questions, like ‘Have you felt your baby move?’ and ‘Has your baby kicked?”
Leanne didn’t have time to answer. She was immediately wheeled into surgery. At 9:25, Kadence Joy was born via emergency cesarean section. By 9:30, she was on a helicopter bound for McKay-Dee Hospital in Ogden. By midnight, she was on another helicopter, bound for Primary Children’s Medical Center in Salt Lake City.
The tiny baby’s diagnosis was hydrops fetalis, a condition characterized by an excess of fluid in the lungs, heart, abdomen and skin. In that first helicopter flight, Kadence received continuous CPR for 20 minutes until she arrived at McKay-Dee, where doctors worked to stabilize her long enough to make it to Primary Children’s.
Most infants with hydrops fetalis don’t survive past birth. For two weeks, Leanne and David kept vigil at Kadence’s plexiglass crib in the NICU. They had yet to hold or kiss their child.
“It was difficult, but we knew how necessary it was to keep her on life support,” says Leanne. At the time, they weren’t sure if she’d ever come off it.
At 13 days, the doctors cautiously removed the chest tubes to see if Kadence could breathe on her own.
“Would you like to hold her?” The nurse asked after the procedure had taken place. Leanne and David’s eyes widened.
“I’ll never forget it,” says Leanne. “I had anticipated it for so long. She was so relaxed. We studied her. I smelled her sweet baby smell for the first time. We learned her favorite position and that she liked the steady rhythm of us patting her.”
It was the first time in two weeks Leanne and David had allowed themselves to feel hopeful.
A month later, Kadence left Salt Lake City to join her parents at their home in Logan. She was alive, but doctors weren’t sure what her physical or mental capacities would be.
At her six-month checkup, Kadence was diagnosed with scoliosis, a condition in which the spine deviates from a typical straight line down the middle of the back. Kadence’s was shaped like an “C,” with curvature far beyond what is considered normal or healthy. Because Kadence was still growing, specialists took a “watch-and-wait” approach, returning for checkups every three months. The curve in her spine worsened by ten degrees between appointments. It caused complications for the toddler, including decreased lung capacity and a significant hump.
“At one visit, we were told by the doctor that, at 80 degrees, there’s concern major organs are being crushed. At that same appointment, he measured her at 78 degrees,” says Leanne. “I literally feared my daughter’s heart would be crushed.”
David drove his family to Shriner’s Hospital of Salt Lake City, where they met Dr. Jacques D’Astous, a pediatric orthopedic surgeon and spine specialist who was frank: Kadence could never be cured, but she would be able to lead a full, normal life.
“At that point,” sighs Leanne, “we knew everything was going to be okay.”
The treatment was aggressive: 7 castings under anesthesia, 1 halo traction application, 2 rod placements, and 4 rod lengthening procedures. With each treatment, the curve of her spine lessened; today, at age 11, Kadence’s curve measures at only 39 degrees.
“Her lung capacity has improved so much, she’s standing taller, and she looks like a normal little girl,” says Leanne. “If Dr. D’Astous hadn’t been our doctor, Kadence may have had more treatment that wouldn’t have been right for her specific circumstances. I know she wouldn’t be thriving like she is today.”
The fear that accompanied Kadence’s entry into the world is all but forgotten these days, replaced by gratitude and tenacity. But one thing hasn’t changed: every opportunity Leanne and David get to hold their girl, they take it and hold on tight.
See more inside our 2017 November/December Issue.