If there’s a book you really want to read, but it hasn’t been written yet, then you must write it.” Toni Morrison
Creating a children’s book from scratch was a huge undertaking. Kim wrote the words, which she read to her daughter Brianna to help her understand the situation. To make it publication-ready, she had some friends proofread and hired Emily Marino, a survivor herself, to illustrate. Both Brianna’s and Emily’s stories appear in the back of the book, which is titled “A Very Special Me.”
The book was kept gender-neutral and broad to appeal to all children. Brianna did insist, however, that the mother character have brown eyes and brown hair like her own mother. After all, this was personal.
At nearly four years old, Brianna began asking a lot of hard questions: Why did she have a bump on her stomach? Why was she having another surgery? A nurse recommended that Kim get a book to help explain it, not knowing that this would turn out to be much more complicated than simply running up to Barnes & Noble. When the book was released, it filled a void in the market, and everyone in Kim’s support group wanted a copy. It was time-consuming for the busy mom, who was shipping it herself, but hearing from parents whose children were delighted to see themselves reflected in its colorful pages made it all worthwhile.
The book may have been intended for children, but its straightforward explanation of what this little-known condition is, as well as its message of hope and love, is equally powerful for adults. Parents often purchase the book when their babies are diagnosed, and pass it along to extended family to help them understand as well.
As a result, Brianna grew up fully aware of what her family called her “boo-boo.” Now older, she has taken to simply calling it “O.” Just like it did her parents that first day, the word “omphalocele” intimidates Brianna. But it also inspired her to share her story and spread awareness about this little-known condition.
Through her involvement in the Mothers of Omphalocele (MOO) support group that had embraced the release of “A Very Special Me,” Kim learned that two states had recognized Omphalocele Awareness Day. She didn’t have to ask Brianna twice if she wanted Michigan to become the third.
In 2015, nine-year-old Brianna reached out to her representative (Rep. Andrea LaFontaine) for Chesterfield Township, who introduced the resolution. Brianna and her family were invited onto the floor of the Capitol to watch as the motion passed to declare January 31 Omphalocele Awareness Day. The next year, Brianna teamed up with another omphalocele survivor from the Grand Rapids area to pass the resolution. Earlier this year, Brianna worked with her current representative (Rep. Pamela Hornberger) to pass it again. Michigan law stipulates that the resolution be re-submitted each year, but Brianna doesn’t mind making the trip. Every year, she looks forward to representing her fellow “O Warriors” in Lansing. And to parents and children affected by an omphalocele, the lively, active Brianna represents a light at the end of the tunnel.
“When my mom tells me she got really scared when they told her the word, it just always freaks me out and makes me sad for the parents who hear that,” she said. “People out there don’t even know what it means, and sometimes it’s not even a big problem. They’re gonna fix you and you’ll be ready to go.”
Twelve years earlier, during a routine ultrasound, the Steffens heard the six words no expectant parents want to hear: “let me go get the doctor.”
The doctor informed them that their baby would have an omphalocele, an abdominal wall defect in which the organs develop outside of the body. The Centers for Disease Control and Prevention estimate that about 775 babies are born with an omphalocele in the United States each year. To the Steffens, the word itself was unknown and frightening. Other birth defects and heart complications often accompany an omphalocele, so an amniocentesis was necessary. At that time, technology was not as advanced as it is now. It took a full two weeks to learn the baby’s fate.
“We had no idea at that point if she’d be okay,” said Kim. “It was definitely frightening.”
Luckily, the omphalocele was determined to be isolated, meaning there would be no other complications. But that didn’t mean there wasn’t a hard road ahead.
When Brianna was born on June 19, 2006, her liver, stomach, gallbladder, and small and large intestines were contained in a protective sac outside of her belly. Just seconds after her birth, she was taken into surgery. Brianna would have more surgeries in her first few weeks than most people have in their whole lives.
When Brianna’s omphalocele was closed for good, her pediatrician said, “From this day on, she’s never been sick.” Her boo-boo was better, and she could live like a normal kid. Now 12 years old, she’s not only normal, but extraordinary.
Brianna is small but lively, with a buzzing energy and an infectious smile. She has just finished the sixth grade at L’Anse Creuse Middle School — North with exceptional grades (which she monitors very closely using an app on her phone). At school, Brianna serves on student council, sings in choir and runs cross country. In her free time, she takes lyrical and ballet dance classes, sings in the Macomb Children’s Choir and performs in plays in her community and at school. She sang the National Anthem at Jimmy John’s Field on Memorial Day this year. She loves children and is an idol for her little sister.
It may come as no surprise that Brianna wants to be an elementary school teacher when she grows up, considering she’s made it her mission to educate the general public about her condition.
“What makes me happy about spreading the word is that people think [an omphalocele] is so scary, and ‘my kid is going to be in all these special classes, and have to be in a wheelchair.’” On the contrary, she says, “I’m singing, I’m dancing, I’m acting, I’m in regular classes, I love school.”
That scary four-syllable word, omphalocele, is certainly no match for Brianna Steffen.
“Sometimes when I’m at a pool I’ll think about it, but then I just go down the water slide and forget about it.”