DAVIS, Calif. — Spina bifida affects 1,500 to 2,000 children per year in the United States, and when mom-to-be Michelle Johnson found out her baby would be born with the condition, she feared the worst. Amazingly, at 25 weeks gestation, the Oregon resident was able to undergo a landmark, life-changing fetal surgery and stem cell procedure that had only been performed once before.
Johnson received the devastating news of her baby’s spina bifida diagnosis 20 weeks into her pregnancy. Before this, her and her partner happily looked ahead to their future with a child of their own after both having one from previous partners. They quickly had to shift their mindset and begin preparing for a life where their child requires reliance on wheelchairs, crutches, and ramps.
“We had no clue of what the fate of that diagnosis would mean for our child. But we did know that no matter what happened, we loved this baby and we would do whatever it took to give our baby the best outcome,” Johnson said.
Their course of action upon diagnosis was scheduling fetal surgery to repair the neural tube defect. As this process was getting underway, Johnson got word about the world’s first FDA-approved human clinical trial, called the “CuRe Trial: Cellular Therapy for In Utero Repair of Myelomeningocele.” Funded by the California Institute for Regenerative Medicine, this trial entails using stem cells before birth as means to treat spina bifida.
She applied knowing that it would come with incredible mental and circumstantial sacrifice, especially with having to uproot themselves to Sacramento for the rest of her pregnancy.
After several screenings and interviews, she was overjoyed to discover that she was accepted as the second patient to ever be enrolled. Conducted by a 40 person team, she had the fetal surgery and stem cell procedure done by placing the stem cells directly on the fetal spinal cord using a patch to correct the defect. The fetus responded well, which everyone was incredibly grateful for.
“Placement of the fetal patch went off without a hitch and mother and fetus did great!” says Diana Farmer, the world’s first woman fetal surgeon, professor and chair of surgery at UC Davis Health and principal investigator behind the procedure.
At 36 weeks, Johnson had a C-section delivery. After eagerly waiting to know the gender, the couple was pleasantly surprised to discover that they had a baby boy. Their son Tobi Maginnis was born at a healthy 7 pounds and 13 ounces, with no fluid buildup in the brain nor grave medical intervention needed. As part of the clinical trial, he will continue to be followed for the next 30 months so the team can assess long-term safety and efficacy.
“He’s eating well and smiling a lot. He’s doing really well. He’s just a rock star,” said Johnson, a week after his birth. “I am so thankful to be part of this journey to find a cure for spina bifida for Tobi and for so many others. They are advancing medicine at UC Davis Health and Tobi is proof of that.”
Watch below this four-part series, “Searching For A Spina Bifida Cure” from UC Davis Health, which highlights the incredible work by Dr. Farmer and her team.