by SACRAMENTO – A groundbreaking clinical trial is underway at UC Davis Health: the world’s first spina bifida treatment combining fetal surgery with stem cells.
A child taking his first steps marks an important milestone, but for 20-month-old Nixon, these steps are a scientific miracle.
“Obviously you love and care for every child, but to see his progress, it’s just different because of what he’s going through and what he’s been through,” said Nixon’s father, Jared Metcalf.
Jared and Lindsey Metcalf had four children before becoming pregnant with Nixon; all four previous pregnancies were uncomplicated.
However, when Lindsey did routine blood work for baby number five, the results showed her markers were high for a neural tube defect.
“We actually got a call on Halloween that my blood counts were slightly elevated,” she said.
When she was 18 weeks pregnant, doctors ordered an ultrasound.
“We went to the ultrasound and that’s when we found out we had spina bifida,” Lindsey said.
While in the womb, little Nixon was diagnosed with myelomeningocele, the most serious stage of spina bifida. This diagnosis can mean paralysis from the waist down and often includes brain abnormalities.
“It was absolutely devastating,” Lindsey said. “We were just trying to keep it together during that appointment and got to the car and broke down together. We felt pretty hopeless and kind of grieving for this life that we had hoped for for our baby.”
But in their darkest hours, this family leaned on hope. Jared’s research led him to the healing trial conducted at UC Davis Children’s Hospital.
Lindsey qualified for the first fetal recovery surgery of its kind, in which doctors first place a patch of stem cells on the fetus’ back before closing it. This new treatment aims to reverse problems in a developing baby before birth.
“This is the first time we have ever placed stem cells into the central nervous system of a fetus,” says Dr. Diana Farmer, a pioneer in fetal surgery and surgeon-scientist from UC Davis.
Dr. Farmer led the charge in Nixon’s case.
“Nixon was part of the first group, and the focus on that was just to make sure it was safe.
Lindsey was operated on before the 25th week of pregnancy as just one of a few patients to ever undergo the cellular therapy for in-utero repair.
Little Nixon was born on February 24, 2023. The scar on his lower back is a kind of battle wound and marks the journey he has made.
“He makes me want to be better because of who he is,” Jared said.
From the first smile to the first steps, every milestone reminds us of how far Nixon has come.
“There’s something really special when I’m lying on the floor in our living room and he comes up to me and tries to tackle me,” Jared said. “It’s pretty amazing.”
While still in the early pilot phase, Dr. Farmer admits she is encouraged by Nixon’s results.
“I can say it looks promising,” she said. “You see patients like Nixon and it’s hard not to be quite excited.”
Dr. Farmer hopes the trial will open the door to families with a similar diagnosis and eventually become standard of care.
“You want to be a mom who doesn’t look anything when the blood test comes back, but there are many who don’t,” she said. “If we could just prevent these diseases instead of a lifetime of therapy, that would be just great.”
Doctors hope to put a total of 35 patients through the cure trial over the next two years. Dr. Farmer said this should give them enough information to determine whether stem cell therapy is superior to fetal surgery alone.
Dina Kupfer
