Stella Turnbull is a bright 6-year-old who loves Taylor Swift, the color purple, and being at school with her friends. She adores her brothers, Treyton and Sayer, who are always there to take care of her.
But Stella has more challenges than an average child. She has a body that doesn’t work like most.
“When I was pregnant with Stella, I just had the intuition that something wasn’t quite right,” says her mom, Sarah.
Despite her worries, Sarah’s ultrasounds looked normal, and soon she and husband, Travis, welcomed what they thought was a healthy baby girl.
When Stella was about a month old, however, Sarah noticed something wrong: Stella became very floppy when Sarah gave her a bath. Stella’s muscle control had rapidly regressed from just days prior.
Stella was diagnosed with spinal muscular atrophy type 1. Spinal muscular atrophy, or SMA, is a genetic neuromuscular disease that weakens all of the body’s muscles and muscle systems, including the ability to swallow, digest food, and breathe independently. SMA is the most common genetic cause of death in infants.
Stella’s case was the most severe her doctors had ever seen. Most children diagnosed with SMA are given less than a year to live, but Stella’s doctors predicted she only had weeks or months.
“They sent us home with nothing. Their advice was to take her home and love her,” Sarah recalls. “I remember we were sitting there rocking her, trying to digest everything they had just said, and she looked at us with the most perplexed look, as if to ask ‘are you giving up on me?’”
The Turnbulls were determined to find a hospital that could help their daughter. After conducting research, Sarah contacted University of Iowa Stead Family Children’s Hospital.
While many facilities don’t typically care for patients with SMA, pediatric pulmonologist Timothy Starner, MD, and colleagues from 10 other UI Stead Family Children’s Hospital specialties were ready to work together to determine the type of care Stella needed.
“UI Stead Family Children’s Hospital is willing to take on special cases and go above and beyond the normal protocols,” says Travis. “As a result, Stella is doing better than anyone would have ever predicted.”
Because Stella’s condition is rare, her treatment plan has required the collective knowledge of her doctors, nurses, and parents. She has needed a feeding tube, a ventilator, spinal fusion surgery, and infusions to keep her bones strong.
The Turnbulls don’t know what the future holds for Stella, but they are grateful for the specialized care UI Stead Family Children’s Hospital has and continues to provide.
“Stella has been an inspiration to us. She’s reaching milestones that I would say we all questioned would happen at one time or another,” says Travis.
“A lot of that has to do with being surrounded by a staff that’s willing to go above and beyond and think outside the box,” Travis says. “Together, we’re re-writing the textbooks.”