How a landmark UC Davis Health clinical trial to treat spina bifida gave one Roseville family hope
SACRAMENTO — A landmark clinical trial is underway at UC Davis Health: the world's first spina bifida treatment combining fetal surgery with stem cells.
A child taking their first steps marks a major milestone, but for 20-month-old Nixon, his steps are scientifically a miracle.
"Obviously, every child you love and care for, but to see his progress, it's just different because of what he's going through and what he's gone through," Nixon's father, Jared Metcalf, said.
Jared and Lindsey Metcalf had four children before getting pregnant with Nixon — all four previous pregnancies were uncomplicated.
However, when Lindsey went in for routine blood work for baby number five, the results revealed her markers were high for a neural tube defect.
"We actually got a phone call on Halloween that my bloodwork had come back slightly elevated," she said.
At 18 weeks pregnant, doctors ordered an ultrasound.
"We went into the ultrasound and that's when we found out that we had spina bifida," Lindsey said.
While in the womb, little Nixon was diagnosed with myelomeningocele, which is the most severe 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 just tried to hold it together during that appointment and got to the car and broke down together. Feeling pretty hopeless and kind of mourning this life that we had hoped for our baby."
But in their darkest hours, this family leaned on hope. Jared's research led him to the cure trial being conducted at UC Davis Children's Hospital.
Lindsey qualified for the first-of-its-kind fetal repair surgery where doctors first place a patch of stem cells on the fetus' back before closing it up. This novel treatment aims to reverse issues in a developing baby before birth.
"This is the first time we have ever put stem cells inside of a fetus' central nervous system," said fetal surgery pioneer and UC Davis surgeon-scientist Dr. Diana Farmer.
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 went into surgery prior to 25 weeks gestation as just one of a handful of patients to have ever undergone the cellular therapy for in-utero repair.
On February 24, 2023, little Nixon was born. The scar on his lower back is a battle wound of sorts, marking the journey he's been through.
"He makes me want to be better because of who he is," Jared said.
From first smiles to first steps, each milestone is a reminder of how far Nixon has come.
"There is something very special when I lay on the ground in our living room and he comes over to me and tries to tackle me,' Jared said. "It's pretty awesome."
While still early in the trial phase, Dr. Farmer admits that 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 pretty excited."
Dr. Farmer hopes the trial unlocks the door for families who have a similar diagnosis, and eventually become standard of care.
"You want to be a mom that when the blood test comes back, there is nothing there, but there are many for whom that is not the case," she said. "If we could just prevent these diseases instead of a lifetime of therapy, it would just be great."
Doctors hope to put a total of 35 patients through the cure trial in the next two years, which Dr. Farmer said should give them enough information to tell if stem cell therapy is superior to fetal surgery alone.
