Apert Syndrome

Born on June 15, 2021, Rhett Hand was diagnosed at birth with Apert Syndrome, a rare condition affecting the bones and cartilage throughout the body.
“It was a shocking surprise to us all,” his mom Ashley recalls. “Less than 25% of cases are diagnosed in the womb, so it was something we never saw coming. But what felt overwhelming at first, has truly blessed our family.”

From the very beginning, Rhett’s care at Children’s of Alabama was both comprehensive and deeply personal. His craniofacial surgeon, Dr. Rene P. Myers, created a  plan to address the premature fusion of Rhett’s skull, working closely with neurosurgeon Dr. James M. Johnston. 

“From day one, we felt an immediate sense of assurance,” Ashley said. “They didn’t just see Rhett as a case, they saw him as an individual.”

When Rhett was just four months old, that plan shifted suddenly. Signs of increased pressure led to an emergency surgery earlier than expected. 

“As a parent, it feels impossible to hand your baby over for something so big,” Ashley shared. “But our doctors took the time to explain everything, answer every question and truly listened to us. We always felt like part of the team.”

Over the next several years, Rhett would undergo more than a dozen surgeries, including two major cranial procedures, one being a frontal orbital advancement in December 2024. Each step of the way, the Hands felt supported. 

“Our doctors treated us with kindness and patience,” Ashley added. “Our input and concerns were always valued when creating Rhett’s care plan.”

Rhett also faced significant challenges with his hands and feet, as he was born with all of his fingers and toes fused together. This condition is a severe form of syndactyly often called “rosebud hands.” Through multiple intricate surgeries performed by Dr. Erin F. Ransom, Rhett gained the ability to grasp and interact with the world. 

“We are so thankful for his hand mobility,” said Ashley. “Seeing him use his fingers now is something we never take for granted.”

Rhett’s journey highlights the power of a truly multidisciplinary approach to care. In addition to his craniofacial and hand surgeries, he underwent repair of a cleft palate, with his treatment guided by a coordinated team of specialists at Children’s of Alabama. This team included experts in pediatrics, audiology, genetics, speech and language pathology, hand therapy, and orthodontics, all working together under the leadership of his craniofacial surgeons. 

Each provider played a vital role, ensuring that every aspect of Rhett’s development was supported. For the Hands, this collaborative approach meant that Rhett’s care was not only comprehensive, but seamlessly connected—giving him the best possible outcome at every stage.

Beyond surgeries, Rhett began physical and occupational therapy at six months old and added speech therapy at age one. The Hands committed fully, traveling hours each week for specialized care. 

“To say we were busy in the early years is an understatement,” Ashley added. “But we knew we had to be proactive, and now we’re seeing the reward of that effort.”
Today, at four years old, Rhett is thriving in ways that once felt uncertain. He is fully mobile and fully verbal. He plays outside, loves basketball, enjoys school and greets everyone he meets with a cheerful “Hi!” 

“At the age of 4, he’s exceeding our wildest expectations,” said Ashley. “Despite everything, he lives an incredibly normal, joyful life.”

For the Hands, the care they received made all the difference. “We’ve met other Apert families who have to travel out of state for this level of care,” she explained. “We feel incredibly blessed to have it right here. Children’s of Alabama gave Rhett a foundation that changed his life.” 

Ashley added that from the moment they met the medical teams, they were shocked at how Rhett was treated as an individual rather than a “textbook case”. 

“As a parent, it feels impossible to send your child back for life changing surgeries, but our doctors valued our opinions and input on Rhett’s care taking time to answer questions and validate our concerns,” she said. “Our relationship with our doctors goes beyond patient care. They feel like family and will forever hold a special place in Rhett’s story.”

Rhett continues to bless his family every day, and his smile and personality light up every room he walks into. He enjoys the outdoors, playing basketball, spending time with family, attending school and driving his power wheels.