A modern medical miracle happened in Davis, California.
The second patient ever to undergo a landmark stem cell procedure for spina bifida — while still in the womb — was born. Well, he’s a few months old already. His name is Tobi, and “he’s a rock star!”
Spina bifida, also known as myelomeningocele or MMC, involves abnormal development of an unborn baby’s spine and spinal cord, the column of nerves that connect the body’s nerve system to the brain. It affects 1,500 to 2,000 children per year in the United States. Depending on the location of the abnormality on the spine, effects can range from paralysis (often of lower limbs) to mental handicaps.
When mom-to-be Michelle Johnson discovered her baby would be born with the condition, she feared the worst. Upon receiving the devastating news of her baby’s spina bifida diagnosis 20 weeks into her pregnancy, she and her partner quickly shifted their mindset. They began preparing for a life where their child requires reliance on wheelchairs, crutches, and ramps.
However, at 25 weeks gestation, the Oregon resident underwent an amazing, landmark, life-changing fetal surgery and stem cell procedure only performed once before.
“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.
Upon diagnosis, their first course of action was to schedule fetal surgery to repair the neural tube defect. But, Johnson learned 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 involves employing stem cells before birth to treat spina bifida.
She applied, knowing that it would come with insurmountable sacrifice, the least of which was uprooting their family to Sacramento for the rest of her pregnancy.
After the screening and interview process, Johnson was accepted as the second patient to enroll. 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 baby responded well.
“Placement of the fetal patch went off without a hitch, and mother and fetus did great!” says Diana Farmer, 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.
The couple waited until delivery to find out the gender. They were ecstatic to learn they had a son! Tobi Maginnis was born at a healthy 7 pounds and 13 ounces, with no fluid buildup in the brain nor extensive medical intervention needed. He will continue to be followed for the next 30 months so the team can assess long-term safety and efficacy as part of the clinical trial.
“He’s eating well and smiling a lot. He’s doing really well. He’s just a rock star,” his mom said 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.”
Praise God! What magnificent news to hear! We wish mom, dad, brothers, and sisters, and especially Baby Tobi, all the blessings and miracles this world has to offer.