Little girl reminds innovators why they do what they do

A little girl whose family feared the worst when she was diagnosed with spina bifida runs across the stage to her mother. They’re wearing matching dresses, but while Harper Brown is beaming, her mother has tears in her eyes. Jenna Brown scoops up her daughter and holds her in front of a microphone.

“Thank you for having us,” the 3-year-old girl with a big bow in her hair says to the audience.

People laugh gently. Some of the tension that had gripped the room is eased. It’s a relief to see how well Harper is doing. 

The video that played before her entrance at the SCBIO conference, a gathering of South Carolina organizations and entrepreneurs involved in health care, medical devices, biotechnology, pharmaceuticals, life sciences, research and education, took the audience back to 2015. That’s when Brown and her husband learned the baby she was carrying had a serious health problem and agreed to let a photographer from MUSC Health in Charleston, South Carolina, document their journey.

“Our unborn daughter was diagnosed with the most severe form of spina bifida. Spina bifida is a birth defect that occurs within the first month of pregnancy,” Brown says. “During this embryonic stage, the spinal cord fails to develop or close properly, leading to paralysis, bowel and bladder incontinence and multiple brain conditions.”

As the video makes clear, it was an emotionally wrenching time. Brown and her husband were trying to adjust to the idea that their daughter might have a very different life than the one they’d envisioned. But they found hope in the form of MUSC Children’s Health neurosurgeon Ramin Eskandari.  

“We sat across the room from a man not much older than ourselves and discussed his plan and his outlook,” Brown says, describing their first meeting with Eskandari. “In a short span of time, our demeanor shifted. We went from feeling completely powerless to gaining an immense amount of trust in a total stranger.”

Eskandari operated on Harper the day after she was born, repairing her spinal cord. While she has a severe form of spina bifida, myelomeningocele, it’s a relatively mild case. Under the care of MUSC Children’s Health doctors, Harper has gone on to hit all of the developmental milestones.

Her parents are so amazed by what medical expertise and technology have done for Harper that Jenna Brown left her job as a teacher to become an advocate for other families dealing with similar situations. That role brought them to the SCBIO conference. SCBIO is part of the  international Biotechnology Innovation Organization trade association.

Harper and her mother aren’t industry experts. They’re a real-life example of why medical innovation is so important. Brown knows that just a few generations ago, a baby born with spina bifida would have about a 10 percent chance of surviving. Today, thanks to advances in medical techniques and technology, most children with spina bifida lead active lives.

Eskandari credits the open minds of industry leaders and academic leaders for driving those advances. “It’s because of people like you and the commitment to improve technology that I’m able to offer treatments to children who my mentors would have likely turned away,” he tells the SCBIO conference crowd.

He makes a pitch for continued innovation in another area: brain injury. “Medical breakthroughs in pediatric brain injury are the next big challenge. It’s by joining surgical and nonsurgical teams in research that will ultimately find a way to become victorious against these devastating diseases. Thank you for not backing down when the temporary obstacles of life sciences start to pile up.”

The Brown family knows all about not backing down in the face of obstacles. “We have a lifelong battle to endure,” Jenna Brown says. “But with the hope we have for Harper, we will conquer it as it presents itself. We are fortunate to live day to day comfortably and confidently knowing we have MUSC and Dr. Eskandari in our corner.”