Hope & Gratitude at UC Davis Children’s Hospital
Sacramento, Calif. – Lindsey was 18 weeks pregnant with her fifth child when she got a life-changing phone call. Her blood work was abnormal. She and husband, Jared, went in for an ultrasound and got some news they never expected: Their developing baby had spina bifida.
“They took us in a room and said things like paralysis and brain abnormalities,” Lindsey said, tearfully. “It was absolutely devastating. We were mourning this life we had hoped for our baby.”
Spina bifida, called myelomeningocele, occurs when spinal tissue fails to fuse properly during the early stages of pregnancy. The birth defect can lead to a range of lifelong cognitive, mobility, urinary and bowel disabilities. It affects 1,500 to 2,000 children in the U.S. every year. Spina bifida can range from mild to severe and their developing baby, a boy to be named Nixon, had the most severe form.
The couple was panicked.
“I am telling everybody it’s going to be OK,” Jared said. “But at that moment, I wasn’t sure it was going to be OK.”
But they were determined.
Searching for answers
Jared began Googling. He found UC Davis Children’s Hospital and learned about a landmark clinical trial at UC Davis Health, known formally as the “CuRe Trial: Cellular Therapy for In Utero Repair of Myelomeningocele.” It is the world’s first spina bifida treatment combining fetal surgery with stem cells.
“When we found out about it, we were super hopeful,” Lindsey said. “Jared made a phone call, hoping we would be able to get into the trial.” They made an appointment and crossed their fingers.
“We met with Dr. Farmer, Dr. Hirose and the fetal care team. They answered all our questions and were super informative,” Lindsey said. “They offered us the hope we were looking for. It was incredible. Truly a miracle.”
Lindsey and Jared signed the papers and committed to being part of the CuRe Trial. Lindsey would be patient number six. A surgery date was set.
“The surgery had to be before 25 weeks. We got diagnosed in November, so they scheduled a surgery date for Dec. 21, 2023,” Lindsey said.
Hope for Nixon
In this first-of-its-kind fetal surgery for spina bifida, UC Davis surgeons apply a special stem cell patch to the spinal cord of the developing baby.
“I was willing to do the surgery to give Nixon the best chance, but I had never had a major surgery in my life,” Lindsey said. “When they explained it to me, I said, ‘Can you explain it one more time? What exactly are you doing? How is this even scientifically possible?’ It was a lot to take in.”
They wheeled Lindsey back to the operating room. She said goodbye to her husband.
“Walking Lindsey into surgery, I had complete confidence in the care. I researched the CuRe Trial, but I researched the doctors as well,” Jared said. “I came to realize that I was among the brightest minds on the planet. You have scientists behind this. You have Dr. Farmer and Dr. Hirose who are pioneers in their field. The team is phenomenal.”
Despite their confidence, Lindsey was scared, still trying to wrap her mind around what was about to happen.
“They took me to the operating room that was full of doctors and nurses and staff. It was very intimidating. But then the sweetest thing happened,” Lindsey said. “Dr. Farmer – she’s amazing, a brilliant mind but also compassionate and caring – came and stood at my side and held my hand as I drifted off. That is how she’s been on this whole journey for us. She’s there for you and cares so much about these kids.”
Surgery is a success
After the fetal repair surgery, Lindsey had weekly ultrasounds to monitor her baby’s movements. She did that for four weeks until her water broke at 29 weeks. She was hospitalized for the rest of her pregnancy. She made it to 34 weeks.
“It was so much relief. We got him here. Finally,” Lindsey said. “I felt like, ‘I did my job, he’s here’. Let the professionals take over.”
Next steps
Nixon, now 1 year old, loves playing catch, wrestling his brothers and especially loves being outside.
Jared and Lindsey say their son is an absolute miracle. He’s doing well, taking steps with help. They’re waiting for him to let go of the furniture and walk on his own.
“He is cruising around and gets where he wants to go,’ Lindsey said. “Nixon is a little fighter. He’s determined and I know there are great things in store for him.” Jared agrees. “It’s hard to put into words but there’s something really special about Nixon,” Jared said. “It’s amazing considering what he’s gone through.”
Nixon’s favorite activities now include taking walks together and going to the park.
“Every milestone is a reminder. He works so hard for it. You celebrate it that much more,” Lindsey said. “Every day we are so grateful for modern medicine.”
Nixon has follow-up appointments to gauge his progress as part of the clinical trial but does not require any other treatment. His parents are thrilled with his progress.
“We are hopeful,” Jared said. “The CuRe Trial is a gamechanger. We are so grateful to have found UC Davis Children’s Hospital.”