Learning their long-awaited child had spina bifida — a birth defect in which the spinal column doesn’t form properly, leaving a section of spinal cord and nerves exposed through an opening in the back — was devastating. They received the diagnosis during an anatomy scan about 21 weeks into the pregnancy. Their physician provided some information about the situation that seemed grim to the couple.

“He said, ‘She will certainly be in a wheelchair,’” Alicia recalls. “He said 64 percent of families usually abort their child when they find out they have this disability, and he told us we had two weeks to decide if we wanted to terminate the pregnancy.”

The experience left them shaken and depressed.

“I had to tell my son that there was something wrong with the sister he had prayed for,” Alicia shares. “I just kept thinking, ‘What did I do wrong? Why me?”

CHOP offers hope before birth

Termination was not an option for the couple, so their physician connected them with the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment (CFDT) at Children’s Hospital of Philadelphia (CHOP). Alicia began to feel more hopeful from the first call with the CFDT fetal coordinator. The coordinator calmly explained the condition in detail and that physicians aren’t certain what causes it. She said there were treatment options depending on the location of the spinal lesion and scheduled the couple to meet with the center’s team.

Advanced imaging tests and a detailed evaluation at the center confirmed the location of the defect and the presence of hindbrain herniation, in which part of the brain descends into the upper portion of the spinal canal in the neck, blocking the circulation of cerebrospinal fluid. It can cause hydrocephalus and injure the developing brain.

The evaluation confirmed Sofia-Rose was a candidate for fetal surgery, a delicate procedure in which fetal surgeons open the uterus and close the opening in the baby’s back. Closing the spinal opening before the baby is born protects the spinal cord from continued exposure to amniotic fluid, which can cause progressive damage, and can reverse the devastating effects of hindbrain herniation.

Preparing for fetal surgery

The couple met with the treatment team to discuss the surgery and potential outcomes. The plan was for Alicia to have a cesarean delivery at 37 weeks in the Garbose Family Special Delivery Unit (SDU), the world's first birth facility in a pediatric hospital specifically designed for healthy mothers carrying babies with known birth defects. Sofia-Rose would then receive postnatal care in the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU). The team explained that Sofia-Rose might need a catheter and orthotics once she got older.

“They fully explained how it could help and what Sofia-Rose’s life could be like,” says Alicia. “I felt hopeful that we were giving her the best chance at life.”

Two weeks later, Alicia underwent fetal surgery. She was relieved to feel Sofia-Rose kicking the next day. Alicia took medical leave from work and spent the next 12 weeks on bedrest. She stayed at her mother’s house to be closer to CHOP for weekly follow-up appointments. Her mother, father and sister were a huge help, caring for both her and Rylan.

“Without the support of my husband, immediate family and CHOP, I don’t think I would have been able to do it,” she says. She also joined an online Facebook group for moms who undergo fetal surgery and was able to connect with women from all over the country with this shared experience.

At 36 weeks and six days, clinicians discovered during a pre-op appointment that Alicia had global membrane separation. Sofia-Rose needed to be delivered immediately. To everyone’s glee, she came out kicking and screaming. After birth, Sofia-Rose was cared for in the N/IICU by a dedicated Neonatal Surgical Team. Her hindbrain herniation was completely reversed and she didn’t require any special care for spina bifida.

Leaving smiles in her wake

Today, Sofia-Rose is 8 years old and every single day, she continues to defy the odds that were once placed in front of her.

"When we first heard her diagnosis, we were told what her life might not be," says her mom. "But Sofia-Rose has spent the last eight years showing us, and everyone around her, exactly what her life is. She is thriving."

Sofia-Rose attends a private school without any aides or IEP. She walks fully on her own, strong and independent, and continues to go for regular scans to ensure she is developing as she should. Each appointment is a reminder of how far she has come and how much she continues to exceed expectations.

But what makes Sofia truly special goes far beyond milestones.

She is strong, smart, funny, joyful, resilient, and full of personality. She has a light about her that draws people in. She leaves smiles everywhere she goes. She is incredibly talented and has found her passion in art. Now in 3rd grade, her favorite place to be is in art class, where she can express herself freely, bringing her imagination to life through her drawings.

At home, she is just a kid laughing, playing, and making memories. She loves spending time with her friends and family, and her bond with her big brother, Rylan, is something truly special. Together, they spend hours collecting Pokémon cards, working side by side to complete their sets, sharing excitement in the little things.

Sofia-Rose knows she has spina bifida and she doesn’t shy away from it. We’ve always made it a point to be open, to help her understand her story, and to give her the confidence to share it. And she does, proudly, especially with her school and people around her. 

Sofia-Rose is not defined by her diagnosis, she is defined by her spirit, her determination, and the way she continues to prove, year after year, that she is capable of anything. And she’s just getting started.

Hear from Sofia-Rose's family about their journey.

Updated June 2026