Born With Fused Fingers and Toes, Baby Sonny’s Parents Refused to Stop Searching for Answers

When Kellie and Josh welcomed their baby boy Sonny, they experienced a moment of joy followed almost immediately by an unexpected medical discovery.

Kellie’s pregnancy had been uncomplicated. Every ultrasound had appeared normal, and the couple had decided not to learn their baby’s sex before delivery.

But when Sonny was placed in his mother’s arms, she noticed something unusual about his tiny hands and feet.

His fingers and toes were present, but several were fused together.

Sonny was taken to the neonatal intensive care unit for further examination. Within 24 hours, doctors diagnosed him with Apert syndrome.

A Rare Condition Affecting His Skull, Hands and Feet

Apert syndrome is a rare genetic condition that affects the development of the skull, face, hands and feet.

Children with the condition may have craniosynostosis, in which skull bones fuse prematurely, potentially restricting normal skull growth.

They can also have syndactyly, meaning two or more fingers or toes are joined together.

For Sonny, both his skull and hands would require specialized treatment.

His parents began researching the condition and connecting with other families who had children with Apert syndrome.

His First Major Surgery Was on His Skull

Because premature fusion of skull bones can interfere with normal growth, addressing Sonny’s craniosynostosis became the family’s first priority.

In March 2020, Sonny underwent skull-release surgery near the family’s home in Charlotte, North Carolina.

After his recovery, his parents turned their attention toward his hands.

They wanted to understand whether separating his fused fingers could give him additional movement and independence.

Two Hospitals Recommended Leaving Some Fingers Together

Kellie and Josh consulted two medical centers in North Carolina.

Both advised against separating all of Sonny’s fingers. The specialists believed that leaving certain middle fingers joined might provide better function than creating two thinner, potentially weaker digits.

His parents understood the concern, but they wanted another opinion before making a final decision.

Through an online community for families affected by Apert syndrome, they learned about the Craniofacial Program at Boston Children’s Hospital.

They arranged a virtual consultation with the surgical team.

A New Surgical Plan Offered Another Possibility

At Boston Children’s, plastic surgeons Dr. Brian Labow and Dr. Amir Taghinia evaluated Sonny’s hands.

They classified his hand differences as type 1 syndactyly: his index, middle and ring fingers were joined, while his thumbs remained separate.

The surgeons believed that his fingers could be separated through a series of carefully planned procedures.

Because reconstructive surgery requires using skin to cover the newly separated fingers, the team recommended a staged approach rather than attempting every separation at once.

Sonny underwent syndactyly separation surgery in November 2021, shortly before his fourth birthday.

The Little Boy Who Loves His Hands

By the time Boston Children’s shared his story in August 2022, Sonny was an energetic four-year-old who enjoyed swimming, biking, basketball, baseball, puzzles and playing with his older sister Maddie.

His family was preparing for another procedure to separate his remaining fused middle fingers.

Sonny had also developed a touching habit: looking at his hands, naming his fingers and expressing how much he loved them.

For Kellie and Josh, the journey was never simply about changing how their son’s hands looked. It was about understanding his condition, exploring treatment options and supporting the activities he wanted to enjoy.

Source: Boston Children’s Hospital, August 15, 2022 — Sonny’s Story: How an Online Apert Syndrome Community Set One Family on a Path to Boston.