Meet Kace
Olivia and Jackson were excited to welcome their second child, Kace. But when Olivia was only a few months pregnant, Kace was diagnosed with the most severe form of spina bifida. His spine and spinal cord weren’t forming correctly in the womb. Without intervention, Kace would be born with hydrocephalus, or abnormal fluid retention in the brain. He might lose all movement in his legs.
Olivia and Jackson had two options. They could wait until Kace was born to surgically repair his spinal defect. Or they could pursue surgery while he was still in the womb. If they chose fetal surgery, Kace would have a chance to heal from the procedure even before he was born.
Olivia and Jackson were on a tight timeline; this surgery could only be conducted between 19 and 26 weeks of pregnancy. They immediately began researching hospitals and visited two top-ranked children’s hospitals outside of their hometown of Columbus, Ohio. But Olivia had an unrelated complication, a subchorionic hemorrhage on her uterus, which could cause her to go into labor directly after surgery. Concerned about this risk, the other hospitals turned them down. However, several doctors mentioned that if they were facing a precarious situation with an unborn baby, they would go to the Fetal Center at Nationwide Children’s. Olivia and Jackson hadn’t realized that the top-ranked children’s hospital in their own city also had a highly respected fetal medicine team.
Right away, the Fetal Center team — from Chief of Fetal Medicine Adolfo Etchegaray, MD, and Surgeon-in-Chief Oluyinka O. Olutoye, MD, to all their team members — made Olivia and Jackson really feel like parents, not a problem to solve. They fully acknowledged the possibility of complications or premature birth. But they made two things clear: fetal surgery was the best choice for Kace and safe for Olivia. At that point, “we decided Nationwide Children’s has got to be the team that’s going to take care of our son,” Olivia said.
The surgery was a success. Kace’s spinal defect was closed, and Olivia did not go into labor. The next few months were a challenge for the parents. Olivia was placed on bed rest, but they still needed to care for their older son and attend frequent appointments. Four weeks after the surgery, their patience was rewarded. An MRI showed that Kace’s brain was recovering from a malformation caused by the spina bifida. The damage was being reversed.
Although the team had prepared Olivia and Jackson for a premature birth, Kace was born at 37 weeks and six days, much later than anyone expected. After a stay in Nationwide Children’s neonatal intensive care unit, he came home.
Today, Kace is a happy baby. His parents are hopeful that he will continue to meet his milestones. He can move his knees. He doesn’t know yet how hard his clinical team worked to make that happen. But someday he will — Nationwide Children's is like family, now.
"The whole team felt like family by the end of the whole journey," Olivia said. "They genuinely cared for us and for Kace."
