Estimated read time: 3-4 minutes
SALT LAKE CITY — The Vance family is all smiles these days. They're a happy family of four, but their journey to get here was anything but easy.
When Maddison Vance was pregnant with her second child, a baby girl named Jaycie, everything seemed to be progressing normally.
"It was just a routine, 20-week ultrasound," Maddison recalled.
Her husband, Grem Vance, said there was no indication that anything was wrong.
"We didn't get like the vibe that anything was wrong, right?" he said.
At first, there was no reason to worry. Until suddenly, there was.
During a follow-up conversation, the family received unexpected news.
"We think that we see something in the pictures. It looks like there's some signs of spina bifida," they were told.
Spina bifida is a condition in which a baby's spine does not form properly, leaving part of the spinal cord exposed.
The condition can affect mobility, brain development and lifelong independence.
As Maddison and Grem learned more about the diagnosis, they were introduced to a rare procedure that can be performed while a baby is still in the womb — one that can significantly reduce complications associated with spina bifida.
In years past, families seeking this type of specialized care often had to travel out of state, but the Vance family was able to receive treatment close to home at Primary Children's Hospital.
"The fact that it was just 30 miles away from our house was amazing, that we were able to do it so close to home," Maddison said.
At 26 weeks pregnant, Maddison underwent fetal surgery before Jaycie was born.
"They made an incision from my belly button down, and then they pulled the uterus up, and they went into my uterus with the camera and the tools and were able to stitch up that hole in her back," she said.
The surgery gave Jaycie valuable time to continue growing while helping protect her spine from further damage.
For Maddison, however, recovery was challenging.
"And then I just had to recover while I was still growing her. I was recovering with an incision, and my belly was expanding, so it was crazy," she said.
When Jaycie was finally born, the evidence of that surgery was already visible.
"We could see the scar on her back. The stitches were already there," Maddison said.
For the Vance family, that scar serves as a powerful reminder of the journey they endured together.
"I have a scar on my belly that matches the scar in her back, and I appreciate my scar and hers. It was just a wild ride," Maddison said.
Today, at 8 months old, Jaycie is thriving.
"She's just a normal, perfect baby, you know? That just had to have surgery," Maddison said.
Although she continues to be monitored closely, Jaycie receives ongoing care through the Spina Bifida Clinic at Intermountain Primary Children's Hospital.
"Primaries has a whole spina bifida clinic, we see a whole team of people: physical therapists, occupational therapists," Maddison explained.
Looking back, Jaycie's parents remember the uncertainty they felt when they first received the diagnosis, but they also remember the trust they placed in the medical team caring for their daughter.
"We kind of went into it blind, but we trusted the team and thank God we did. Right now she's just a normal baby," Grem said.
The Vance family will continue annual checkups at Primary Children's Hospital, but for now, they are focused on enjoying each new milestone.
For a family that once faced so many unknowns, every smile, every step forward and every day with Jaycie feels like a gift.
Jaycie's story is one of several being featured during KSL’s Giveathon benefiting Primary Children’s Hospital. To support children and families receiving care at Primary Children’s Hospital, visit kslkids.com and donate.
