A pioneering couple uproot their lives to help their baby

Our 2021-22 Annual Report is now online. It’s filled with information about the work we have done over the last year (we are on a fiscal calendar year from July 1 – June 30), the people who have helped us do that work, and some of the people who have benefited from that work. We start our look at some of the stories in the Annual Report with Michelle, Jeff and Tobi.

Michelle, Jeff and baby Tobi

When Michelle Johnson and Jeff Maginnis learned they were expecting a baby they were elated. 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 life-long walking and mobility problems for the child, even paralysis.

The couple were referred to UC Davis where Dr. Diana Farmer and Dr. Aijun Wang were running a clinical trial, funded by CIRM, using stem cells, taken from a donor placenta. The cells were seeded onto a synthetic scaffold which was then placed over the injury site in the womb. Tests in animals show this approach was able to repair the defect and prevent paralysis. Michelle was going to be just the second woman to see if 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), having to relocate till Toby was born. When they approved us for the trial, it was like our prayers had been answered. The second person in the world. Our chances of winning the lottery were better!”

They got the keys to their new home the same day they flew down to Sacramento. The only thing they brought with them, was 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 that problems may not be evident 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.”

3 thoughts on “A pioneering couple uproot their lives to help their baby

  1. Congratulations to the new parents. It’s amazing news. It’s a highly refined scientific operation skills. Kudos to those drs, scientists, stem cell research pioneers and to those Californians who supported proposition 71 (the stem cell bill) to passs and made things like this to happen.. Love to Californians.

  2. Pingback: CIRM-funding supports world’s first stem cell treatment for spina bifida delivered during fetal surgery | The Stem Cellar

  3. Pingback: The Most Read Stem Cellar Blog Posts of 2022 | The Stem Cellar

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