Born With Rare Conditions, Luke Underwent a 13-Hour Surgery — Now He’s Back to Doing What He Loves

When Luke Johnston was born, his parents knew something was different. Doctors discovered several congenital abnormalities, and further testing revealed a rare genetic condition that affected the development of his bones. Years later, another discovery showed that Luke faced a serious risk involving the junction between his skull and spine.

At seven years old, Luke underwent a 13-hour operation to protect his spinal cord. The journey was difficult for his family, but the care team at University of Iowa Health Care Stead Family Children’s Hospital helped him through surgery and recovery. Now eight, Luke enjoys art, puzzles, coding and writing books, including one about his own surgery.

A Rare Diagnosis From the Beginning

Luke was born with several congenital differences, including fused ribs, scoliosis, a tethered spinal cord, congenital ptosis, clubfoot and webbed fingers. He also did not pass his newborn hearing screening.

Blood tests revealed that Luke had Saethre-Chotzen syndrome, a rare genetic disorder that affects the development of the skull and other bones. It is estimated to affect about one in 50,000 babies.

The condition can cause certain bones in the skull to fuse too early, affecting the shape and growth of the head. Other features may include drooping eyelids, differences in the hands and feet, and hearing difficulties. The specific effects vary from person to person.

For Luke, the challenges extended beyond the features initially identified at birth. Before he turned one, he underwent surgery to release his tethered spinal cord and repair his webbed fingers. His family continued working with specialists to understand his medical needs.

An Unexpected Finding During a Sleep Evaluation

Luke also experienced sleep apnea, a condition in which breathing repeatedly stops and starts during sleep. While doctors were evaluating whether a CPAP machine could help keep his airway open, they ordered an MRI.

The scan revealed another rare condition: atlanto-occipital assimilation. In this abnormality, the first cervical vertebra is partly or completely fused with the base of the skull.

Luke’s parents learned that the unusual anatomy placed the area where the brainstem and spinal cord meet at risk. Even a fall or sudden movement could potentially cause serious neurological injury.

His family believed the condition was likely congenital, although it is more commonly recognized in other circumstances. Because of the potential danger, they began searching for a neurosurgeon with experience treating this complex problem in children.

A Family Searches for the Right Specialist

Luke’s parents, Amy and Joey Johnston, sought opinions from several hospitals across the United States. They wanted to find a team that could explain the risks clearly and help their son return to a more active life.

Eventually, they chose University of Iowa Health Care Stead Family Children’s Hospital in Iowa City. Neurosurgeon Dr. Arnold Menezes had experience with the condition, and the family felt confident in the team’s approach.

For Amy and Joey, choosing where Luke would have surgery was an enormous decision. They were balancing the risks of a complicated operation against the possibility of a devastating spinal cord injury if his condition remained untreated.

A 13-Hour Operation on Halloween

Luke’s cervical spinal fusion surgery was scheduled for Halloween. The operation lasted 13 hours and was performed by neurosurgeon Dr. Brian Dlouhy.

Knowing that Luke loved Halloween, the hospital staff dressed up in costumes before his operation so that he would not feel he had missed the holiday entirely. The thoughtful gesture meant a great deal to his parents during an intensely stressful time.

After surgery, Luke required a ventilator and spent time in the intensive care unit. His parents received regular updates from the medical team as they waited for him to recover.

For the family, the experience was emotionally exhausting. They had spent months worrying about their son’s safety, and now they were facing the uncertainty of recovery after a long and complex procedure.

A Special Friend Helps Him Heal

During his hospital stay, Luke met Corrin, the hospital’s facility dog. His mother remembers the moment Luke smiled after seeing the dog — the first time she had seen that smile in a week.

Corrin became a source of comfort and motivation. Luke was willing to get out of bed and participate in therapy when the dog was nearby. Small moments of connection helped make a difficult recovery feel a little less overwhelming.

Luke and his family also experienced the Hawkeye Wave, a tradition in which fans at an Iowa football game wave toward patients watching from the nearby children’s hospital. Seeing so many people acknowledge and cheer for the children brought Luke to tears.

He spent 10 days in the hospital as an inpatient before continuing his recovery.

Back to School, Creativity and New Possibilities

Now eight years old and in second grade, Luke enjoys many of the same activities as other children his age. He likes drawing, solving puzzles, coding and writing stories.

One of his projects was a book about his surgery that he shared with his classmates. Turning a difficult personal experience into something he could explain to others gave him a way to reflect on what he had been through.

Since surgery, restrictions on Luke’s movement have gradually been lifted. He continues to attend follow-up appointments and specialty clinics at Stead Family Children’s Hospital, where his care team monitors his progress.

His parents say the team made an effort to include Luke in decisions whenever possible, even letting him choose the color of his brace. Giving him a voice in small choices helped him feel more involved in his own care.

A Childhood That Is More Than a Diagnosis

Luke’s story includes several rare and complex medical conditions, a long search for specialized care and a major operation with a demanding recovery. He still needs medical follow-up, and his experience cannot predict what every child with similar conditions will face.

But Luke is also a curious student, a creative storyteller and a child who finds joy in puzzles, coding and making people laugh. His journey shows how specialized medical care, family support and thoughtful attention to a child’s emotional needs can work together during a difficult time.

For Amy and Joey, seeing Luke return to the activities he loves has been a source of relief after months of uncertainty. With his family and medical team beside him, Luke continues to grow, learn and discover what is possible.

Sources

University of Iowa Health Care Stead Family Children’s Hospital — “Illinois parents find care for son’s rare spinal condition at Stead Family Children’s Hospital” (October 20, 2025).