At 25 weeks of pregnancy, mother-to-be Michelle Johnson underwent fetal surgery and stem cell procedure to allow surgeons to fight against a rare condition in her child: Spina bifida. This was the second time in the world ever that this operation was performed on anyone.
Spina bifida which affects at least 1,500 children annually in the US was diagnosed in the foetus 20 weeks into Johnson’s pregnancy. When the couple found out that their first-ever child together would be born with such a challenging disorder, they were devastated. Mr and Mrs Johnson, who were excited to meet their child soon and have a future with him, started preparing themselves for wheelchairs and crutches among other things to make life better for their life.
“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.
However, Johnson came across the option of surgery — a landmark, life-changing procedure that could potentially change the entire scenario. However, this kind of surgery had only been performed once before.
When Johnson got to know of the world’s first FDA-approved human clinical trial, called the “CuRe Trial: Cellular Therapy for In Utero Repair of Myelomeningocele, she decided to sign up for it. The fetal surgery would repair the neural tube defect in her baby.
Johnson found out that the trial that uses stem cells before birth as means to treat spina bifida. was funded by the California Institute for Regenerative Medicine. The concerned mother applied for it, despite knowing that she would have to move to Sacramento for the next few months until she delivered the baby.
Her application got accepted after multiple screenings and interviews. Overjoyed, she prepared herself for the upcoming operation which was conducted by a team of 40 people. The doctors placed stem cells directly on the fetus’ spinal cord by using a patch to fix the defect. Fortunately, the fetus responded well and the procedure was successful.
“Placement of the fetal patch went off without a hitch and mother and fetus did great!” said Diana Farmer, the world’s first female fetal surgeon, professor and chair of surgery at UC Davis Health and principal investigator behind the procedure.
With a C-section, Johnson gave birth to a healthy Tobi who is now three months old. Tobi Maginnis was born at a healthy weight of seven pounds and 13 ounces, with no medical complications requiring immediate intervention. However, the medical team will follow Tobi for the next 30 months to examine long-term safety.
“He’s eating well and smiling a lot. He’s doing really well. He’s just a rock star,” Johnson exclaimed, a week after his birth.