Saint Luke’s Babies Defy the Odds After Rare Genetic Condition

When Aria Larson started working in the operating room at Saint Luke’s Hospital of Kansas City, she saw excellence all around her. If she needed care, she thought, this was where she would go.

Several years later, when Aria needed advanced medical care during her pregnancy, her first call was to Jillian Moore, DO, OB-GYN at Saint Luke’s Hospital.

Aria, now a surgical technologist at Saint Luke’s East Hospital, became pregnant with her son Silas in 2023 and opted for carrier screening in addition to genetic testing. The results revealed both Aria and her husband were carriers for spinal muscular atrophy (SMA), a rare genetic disorder that limits the body’s protein production leading to muscle weakness and degeneration. When untreated, SMA is the leading genetic cause of infant mortality.

Any of Aria’s pregnancies had a 1 in 4 chance of carrying a child with SMA, with the risk they might not live past age 2.

“I just checked that fact into the back of my mind and tried to move forward with my pregnancy, being as happy as possible,” Aria says.

Doctor’s orders

Silas was born naturally and appeared healthy. But five days later, his newborn screening confirmed Silas had SMA. He was producing 20% of the protein his body needed, meaning he needed immediate attention.

Aria’s care team at Saint Luke’s with support from maternal-fetal medicine specialists and Children's Mercy, acted fast.

“With SMA, infants are losing muscle neurons every second,” Dr. Moore says. “Without intervention, SMA can have life-long effects, including muscle weakness, breathing difficulties, and eating problems.”

Eleven days after birth, Silas’ team administered a genetic infusion to help boost his protein levels, supplemented by an oral medication he takes regularly. Since receiving the treatment, Silas’ condition has stabilized and, while he is still dealing with the limitations of SMA, his muscles aren’t degenerating like they were.

These were important lessons for Aria going into her second pregnancy.

Early SMA treatment makes all the difference

Aria was 21 weeks pregnant when her daughter, Rowan, was diagnosed with SMA via amniocentesis testing. While Aria and her husband were emotionally preparing for another child with a life-altering genetic condition, they had more time to prepare. And they knew what steps to take.

Rowan was born in June 2025 via cesarian section, allowing her to receive SMA treatments as early as possible. Twenty-six hours after birth, Rowan received oral SMA medication. She later received the same spinal infusion as her brother, albeit six weeks sooner.

“It is noticeable she was treated that much sooner,” Aria says. “We can really tell a difference between our children, even though they have the same type of SMA.”

After 13 days in Saint Luke’s Hospital’s neonatal intensive care unit (NICU), Aria and her husband brought Rowan home.

Rewriting the future

Rowan’s recovery shows how crucial immediate intervention is for SMA children. At 4 months old, she has been hitting her milestones: rolling from back to tummy, keeping her head forward when sitting up, and kicking to the point where her parents struggle to put on her diapers.

Against all odds, Silas recently celebrated his second birthday. And while he cannot crawl, walk, or stand, he is thriving in ways that once seemed impossible.

Aria and her family have a full plate, navigating therapy schedules, feeding challenges, and extended maternity leave. Her message to other families with the same challenges: Find a health system that can help coordinate care and ease the burdens of uncertainty.

“I feel like we've been placed in this position with these kids for a reason,” Aria says. “If I can help other families and direct them to where we got great care, then that’s my goal.”

About Saint Luke’s OB-GYN

At Saint Luke's Hospital Plaza OB-GYN Clinic, located within Saint Luke's Hospital of Kansas City, our specialists offer comprehensive obstetrics and gynecologic care, including annual well-woman exams throughout all phases of life, from puberty to post-menopause. Our team also offers prenatal care, ultrasound, and delivery services for expecting mothers.