updated 01/19/2009 AT 01:00 AM EST
•originally published 01/19/2009 AT 01:00 AM EST
There was a time when Parker and her husband, actor Boris Kodjoe, feared there would be only bad news in their daughter's young life. "We have gone through so many different emotional levels with Sophie," says Kodjoe, 35. "We had the fear of her dying to paralysis. All kinds of different monsters attacked us."
It didn't start out this way. Eight years ago the two met as costars on Showtime's Soul Food, which aired from 2000 to 2004, and the couple went on to have their own short-lived series Second Time Around together. In 2004, the German-bred Kodjoe proposed to Parker, 38, near his hometown of Freiburg atop Kandel mountain. "It was like The Sound of Music," recalls Parker. "It was so romantic."
Immediately after returning home, Parker learned she was pregnant, and after nine months in which tests showed no cause for worry, Parker—who was "religious" about taking prenatal vitamins—delivered Sophie on March 5, 2005. "It was heavenly bliss," she says. With no apparent complications, Kodjoe left the hospital to finish filming the 2005 movie The Gospel. The next day, "the neurologist came in and said, 'We have something to tell you: The nurses found a dimple in the lower part of Sophie's spine,'" recalls Parker. A test confirmed spina bifida, a birth defect with varying degrees of severity (see box). Phoning Kodjoe with the devastating news, "it was like your whole world just crumbles," he says. Adds Parker: "We had to come together as a new couple. We went from a fairy tale to the fast track."
As they came to terms with Sophie's condition, Parker grappled with whether or not she was to blame. "I've racked my brain, been to therapy, cried my eyes out with guilt," she admits. But doctors assured her there was nothing she could have done. Kodjoe agrees: "It was random."
Diagnosed with the most serious form of the defect, Sophie would need surgery to detach her spinal cord from a fatty mass called a lipoma. With wedding plans already underway, the couple married in May 2005 in Freiburg. "Family was all around us, prayers were strengthening us," says Parker. "But the minute it was over, we flew back for the operation."
The surgery was deemed a success. But when Sophie was 2, a severe urinary tract infection revealed that she had developed a neurogenic bladder, a frequent complication of spina bifida in which the nerves that carry messages from the bladder to the brain do not work properly. Given the choice between surgically augmenting her bladder so that it would empty through her belly button or catheterizing her themselves, they chose the latter. "We believe in the body healing itself," says Boris. "We picked the option that gave her bladder that chance."
It has been a huge commitment, with the couple—who welcomed son Nicolas, born healthy, in October 2006—catheterizing Sophie every three hours. Although she resisted at first, now "she sings, 'Take the pee-pee out,'" says Kodjoe. "She took charge."
The couple also have pursued alternative therapies for Sophie, including acupressure massage, laser acupuncture and probiotic supplements to encourage a healthy digestive tract. And they have started the Sophie's Voice Foundation (sophiesvoicefoundation.com) with the goal of raising $2 million for a trial of a new surgical procedure. "Sophie says, 'Mommy, when I grow up I won't use the tubes anymore!'" says Parker. "And I'm hopeful that she's right."