Boris and Nicole Open Up About Sophie's Spina Bifida

Three-year-old Sophie Tei Naaki bounds into her family’s sunny Atlanta kitchen, all smiles and puffy pigtails. “I made poo-poo in the potty!” she declares as her parents erupt into cheers. It’s the kind of positive reinforcement familiar to all parents of young children, but in Sophie’s case, the accomplishment is truly remarkable. Born with spina bifida, Sophie requires round-the-clock catheterization for her bladder, and she must be diligent about potty breaks. “We celebrate the poo-poo here,” says Sophie’s mom, actress Nicole Ari Parker. “It’s good news in this house.”

There was a time when Nicole and her husband, actor Boris Kodjoe, feared there would be only bad news in their young daughter’s life. “We have gone through so many different emotional levels with Sophie,” says Boris, 35. “We had the fear of her dying to paralysis. All kinds of different monsters attacked us.”

Read Sophie’s story and see more photos below.

It didn’t start out this way. Eight years ago the two met as co-stars 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 Boris proposed to Nicole, 38, near his hometown of Freiburg atop Kandel mountain. “It was like The Sound of Music,” recalls Nicole. “It was so romantic.”

Immediately after returning home, Nicole learned she was pregnant. “I was really into great preparation — hypno-birthing, prenatal yoga,” the actress says. “No morning sickness. We did all the testing. There was one test that came back [saying] a chromosome count was off, but when we went into genetic counseling, it was basically, ‘Don’t worry about it.’ And that’s what we decided to do.” Nicole — who was “religious” about taking prenatal vitamins — delivered Sophie on March 5th, 2005. “I labored for a very long time at home with a midwife. I got to the hospital at 7.5 cm and then I stalled,” she explains. “At 8 cm they gave me the epidural and I slept for 45 minutes. I woke up and pushed her out.”

With no apparent complications, Boris 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 Nicole. A test confirmed spina bifida, a birth defect with varying degrees of severity. Phoning Boris with the devastating news, “it was like your whole world just crumbles,” he says. Adds Nicole: “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, Nicole 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. Boris 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 Nicole. “But the minute it was over, we flew back for the operation.” The surgery was deemed a success.

In October 2006, when Sophie was 19 months old, the couple welcomed their second child, son Nicolas Neruda. Although their little boy was healthy, Nicole was not. “I suffered from postpartum [depression] pretty bad with Nicolas, but because the anxiety level of protecting Sophie was so strong, [it was like I had] postpartum covered with super-mom-ness,” the actress explains. “I couldn’t afford to cry. There was no way.”

There was more to come. When Sophie was 2 years old, 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 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 catheterizing Sophie every three hours. It’s also been a difficult adjustment, but one that has gotten better with time.

“[When we introduced it,] they told us it would take six weeks for her to adjust. She was screaming. You would’ve called social services,” admits Nicole. “One day Mommy was using a wipey and changing her diaper, and the next day I’m holding her down, Daddy’s pinning her down and tubing her. It was the worst feeling ever. It was saving her life, so we had to do it. For some reason, after 10 days, she understood.” Adds Boris: “Now she sings, ‘Take the pee-pee out!’ She took charge.”

Still, Nicole and Boris are realistic about the situation. “We don’t fill her head with false optimism,” Nicole explains. “My plan is to teach her by the time she’s five years old about the importance of clean hands, that she can have her own [catheter] case and go to slumber parties. Just [to] have her self-esteem intact. I’m moving in the direction of self-sufficiency with the catheterization.”

Now close to celebrating her fourth birthday, Sophie is doing well. “Her personality surprises us every day,” says Boris. “She’s just sunshine, she’s so bubbly.” Adds Nicole: “After all the crying we’ve done, to hear the giggles, it’s like heaven. Through all the grave circumstances of Sophie’s life, let it be known that she’s still the bossy big sister!”

Boris and Nicole pursue alternative therapies for Sophie, including acupressure massage, laser acupuncture and probiotic supplements to encourage a healthy digestive tract. “[Initially] there’s no time to tell anybody, there’s no time to cry, there’s no time to do anything but make sure your daughter is okay,” Nicole explains. “Now we’re in a rhythm where we feel comfortable blending our Eastern tendencies with Western medicine.” And it’s working. “All the doctors here at the spina bifida center, every time we have another checkup they say, ‘Wow, based on her diagnosis, this is a miracle. Keep doing what you’re doing,'” shares Boris proudly.

Reveals Nicole, “Instead of an antibiotic, we give her a herbal remedy that strengthens the kidneys and is kind of an antiviral formula — UTI Clear. Once in a while she’ll still get a UTI, but before she was getting them once a month! We then put her on a 7-day course of Bactrim — she’s treated with antibiotics on an as-needed basis. When she had her last set of checkups, her kidney and all her bladder functions were amazing.”

The couple has started Sophie’s Voice Foundation with the goal of raising $2 million for the trial of a new surgical procedure which reroutes nerves from functioning legs onto the bladder, where they are taught a new job — to void. “The success has been incredible,” Boris explains. “God doesn’t give you anything you can’t handle. And I’m not going to lie: At first it’s a shock. You want to cry. But especially by looking at Sophie, you get over it quickly. [Fame] is not just a privilege, I think it’s a responsibility. We are here to lend people a voice who don’t have a voice. We’ve committed to that, and we’re going to do whatever we can to give this a huge voice and hopefully change it.”

Adds Nicole, “Sophie says, ‘Mommy, when I grow up I won’t use the tubes anymore!’ And I’m hopeful that she’s right.”

Spina Bifida Facts:

Spina bifida occurs when a baby’s spine fails to close during the first month of pregnancy, resulting in nerve and muscle damage that ranges from mild to extreme. It is estimated that neural tube birth defects like spina bifida occur in seven out of every 10,000 live births in the U.S., according to the Spina Bifida Association.

Research shows that folic acid in prenatal vitamins taken daily prior to conception and during pregnancy can reduce these defects by up to 70%. Fetal surgery — in which doctors operate on the baby’s spine in utero — may also be an option.

For more information, visit Sophie’s Voice Foundation.

Source: PEOPLE, January 19th issue, with excerpts exclusive to CBB

— Michelle Tauber

Have you or your child experienced spina bifida? Please leave your story in the comments.

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