What’s Next for Ty: A Journey Through Arthrogryposis and Early Treatment

Saralyn’s heart dropped to the pit of her stomach as she spoke the only four words that came rushing to her mind: “My baby has what?”

Already the mother of an older son who arrived a decade earlier without complications, this was the first time she had heard the term arthrogryposis. This pregnancy, she was older, and for that reason her doctor had been monitoring her progress more closely.

She learned that at her nine-week scan, a bend in her baby’s wrists and hands had been detected – but because there were not yet any major concerns, nothing was said. However, at her 20-week appointment, the increased curvature was undeniable.

“We were told arthrogryposis was a rare musculoskeletal condition,” Saralyn said. “My husband, Robert, was in shock but trying to hold it together for me. We were both scared to death.”

Internet searches didn’t reveal much information on the condition affecting fewer than 50,000 people in the United States. However, it did further frighten Saralyn by underscoring the chances of limited movement and what could be a tiring struggle to achieve the simple functions of daily life. “When I was 6 years old, my dad broke his neck and was paralyzed from the neck down. I watched my mother be a caregiver to not only my sister and me, but also my father from that day on,” she said. “Would my baby also be dependent on someone else to care for him? I just kept asking 'God, what’s next?’”

In September 2023, the wait to find out what was next was over. Ty arrived via scheduled C-section, unresponsive and struggling to breathe. While his entry into the world was touch and go, he soon stabilized – improving so well that he was able to stay in the room with his mother.

When Ty’s pediatric orthopedist soon came to visit, Saralyn and Robert were very happy with the great interest the young physician showed in their newborn son. Saralyn simultaneously worked to discover physical therapy and occupational therapy services to get a head start on Ty’s ability to gain movement. But when Saralyn asked about a surgical plan, the doctor said it would not be needed until Ty was about 3 years old.

“I had joined a support group online for moms of kids with arthrogryposis, and I knew that wasn’t true for the children I was learning about,” Saralyn said.

In February 2024, treatment began with an in-depth evaluation. The family was grateful for the hospital’s relationship with the nearby Ronald McDonald House, where they stayed during the five-day-long assessment. Ty was scheduled to see Lauren C. Hyer, M.D., at the end of the week.. However, Saralyn said she and Robert knew they made the right choice when Dr. Hyer surprised the family by stopping in to meet their baby boy the first day to observe his physical therapy appointment. Rounding out the medical team and deepening the well of expertise at Shriners Children’s Greenville was Shea B. Ray, M.D., who specializes in corrections of the hand and wrist.

Ty’s first operation was a tendon release to improve range of motion in his left elbow, as well as a procedure that fixed the curling of several of his toes. Surgery for his other elbow is next. The family is relieved to have access to specialists that will create a customized plan for Ty as he gets older, further aiding in his ability to lead a fulfilling, more independent life.

“Even though we have insurance, it means the world to us that we never have to worry about what the insurance company will or won’t approve for his treatment,” said Saralyn. “We know that our team at Shriners Children’s is able to move forward with whatever they know will be best for Ty.”

Since the family lives near the Outer Banks of North Carolina, a telehealth visit to avoid the 400-mile drive for a simple checkup is appreciated. When the six-hour trip is necessary – Ty’s aunt or his grandmother, Lane, will often accompany Saralyn while Robert stays home to work.

“We are so grateful that we found Shriners Children’s,” Lane said during a recent visit. “The doctors and therapists don’t just offer hope – they deliver action and results.”