The moving van was loaded. Jack and Lexy were just a few days away from leaving Ohio for Florida, excited to start their new life closer to family. Their wedding was around the corner, and they were also expecting their first child. Everything seemed perfect.
But then, Lexy had a quick ultrasound appointment before their big move. They thought it would be just another routine check. Instead, they received life-changing news: their daughter had spina bifida.
Spina bifida happens when the spinal cord doesn’t close properly during pregnancy. It affects about 1,500 to 2,000 babies in the U.S. each year. The impact can vary, from mild to severe disabilities.
“We were just in shock,” said Jack. “We had plans, and suddenly everything changed.” They decided to stay in Cincinnati to seek care for their daughter.
Their concern grew as they learned more. Jack’s brother told them about a groundbreaking trial at UC Davis Health called the “CuRe Trial.” This was the world’s first attempt to treat spina bifida through a combination of fetal surgery and stem cell therapy.
Lexy wasn’t ready to make decisions right away. “I just shut down,” she recalled. Meanwhile, Jack reached out to Amy Powne, the clinic manager at UC Davis. After a long call, they felt more informed and less anxious.
The following day, they received a call from Dr. Diana Farmer, a pioneer in fetal surgery. “Her caring nature really calmed us down,” Jack said. The procedure she described involved accessing the fetus to close the neural tube, hoping to prevent further damage.
Days later, they were on a flight to Sacramento to meet Dr. Farmer. “The commitment and expertise of the team gave us confidence,” said Jack. Lexy passed the screening for the trial and was set for surgery on October 11, 2024.
Before that, they traveled back to Florida for their wedding, facing unexpected challenges like a hurricane. Soon after, they moved to Sacramento with their dogs, preparing for the journey ahead.
Unfortunately, Millie had different plans. Lexy went into labor early on Halloween, and Millie was born at just 28 weeks, weighing only 2 pounds, 10 ounces.
Despite their unplanned NICU stay, UC Davis Children’s Hospital provided excellent care, including advanced support for premature infants. “Millie had a surprisingly smooth journey in NICU,” Lexy shared. After 58 days, they finally brought her home.
A year later, baby Millie is thriving—crawling, pulling herself up, and filling their lives with joy. The couple lovingly calls her “Miracle Millie.”
“If I could go back, I wouldn’t change a thing,” Lexy said. Jack added, “It’s important to do everything you can for your child. Moving to Sacramento for the trial was the best choice we made.”
In today’s world of advancements in fetal surgery and treatments, families now have hope where there once was uncertainty. It’s a reminder that even in challenging times, with the right support and resources, there can be a happy ending.
For further reading on spina bifida and its treatment options, check out resources from the National Institute of Neurological Disorders and Stroke.
