When Michelle Johnson and Jeff Maginnis learned they were expecting a baby, they were elated.

Frightening diagnosis

Then an ultrasound exam at 20 weeks into the pregnancy showed the fetus had spina bifida, a birth defect that occurs when the spine and spinal cord don’t form properly.

Spina bifida can result in lifelong walking and mobility problems for the child, even paralysis.

Experimental treatment

The couple was referred to UC Davis, where Dr. Diana Farmer and Dr. Aijun Wang ran a CIRM-funded clinical trial using stem cells from a donor placenta.

The cells were seeded onto a synthetic scaffold, which was then placed over the injury site in the womb. Animal tests showed this approach could repair the defect and prevent paralysis. Michelle would be the second woman to see whether this approach also worked in people.

For the couple, it wasn’t an easy decision. They had just bought a house and hadn’t even moved in. Michelle said they had to work quickly.

“It was a tough 3 – 5 days, a lot of research, a lot of soul-searching, trying to figure out what to do. I had always heard that stem cells were the medicine of the future and so I said ‘wow, this is amazing, we have to do this.’ That meant moving down here (to Sacramento from Portland, Oregon) and relocating until Toby was born. When they got approved for the trial, it felt like our prayers had been answered. The second person in the world. Our chances of winning the lottery were better!”

Next steps

They got the keys to their new home the same day they flew down to Sacramento. They brought only their dog.

Michelle said the surgery was challenging: “It’s really hard to heal from surgery when you have a child still growing at the incision site. That was hard.” But she says when the baby was born it was all worthwhile: “Holding him for the first time and it was like, I can’t believe we did this, we made it, we survived this crazy experience of surgery and just not knowing if this will even work. But then he’s born, and he’s just so normal.”

They named their son Tobi. Dad Jeff says three months in, everything is looking promising; Tobi is hitting all his milestones and wriggling his legs. They know problems may not show up until Tobi tries to crawl and walk. But for now, they are happy.

And Michelle says Tobi is too. “He is the happiest baby, and I said I think everyone needs some stem cells, because he’s so happy all the time.”

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• Closer to Cures: Diana Farmer discusses clinical trials for spina bifida