When Mecca was 20 weeks pregnant with her son, My’Aire, a routine prenatal appointment in her hometown of Atlanta suddenly changed course.

An ultrasound revealed concerns about the baby’s heart, and doctors immediately recommended additional testing.

“They said, ‘There is something going on with his heart,’” Mecca recalls. “I kept asking, ‘Can you tell me what is wrong?’”

Mecca was referred to a fetal cardiologist. The evaluation revealed that My’Aire had tetralogy of Fallot, a complex congenital heart defect that affects blood flow through the heart. While the diagnosis was frightening, it was only the beginning of a medical journey that would reveal additional challenges after My’Aire was born.

A complex beginning

Born in January 2019, My’Aire’s physical differences led to a diagnosis of Goldenhar syndrome, a rare condition that can affect the development of the face, ears and spine. In some instances, the condition causes issues with organs such as the heart, kidneys and lungs. Mecca struggled to understand the condition and how it would affect her child: “I had no idea what it was,” Mecca says.

After birth, My’Aire had difficulty breathing. Doctors discovered extra tissue in his larynx that was contributing to his breathing issues.

My’Aire spent the first four months of his life in a neonatal intensive care unit (NICU). Because he was unable to suck effectively, likely due to the underdevelopment of his jaw, he required a gastrostomy tube (G-tube) for feeding. Doctors identified the several ways that Goldenhar syndrome was manifesting in My’Aire: a small left ear (microtia), underdeveloped jaw, fused vertebrae in his upper neck, and a hidden opening in the muscles of the roof of his mouth, known as a submucous cleft palate.

After leaving the NICU in May, Mecca relocated from Atlanta to New Jersey to be closer to family. The move ended up putting her near to the specialized care her son would need.

Finding a team at CHOP

Mecca initially brought My’Aire to Children’s Hospital of Philadelphia’s Specialty Care and Surgery Center in Voorhees, New Jersey. From there, he was referred to CHOP's Philadelphia campus, where a multidisciplinary team would help coordinate the many aspects of his care.

At CHOP, specialists determined it was time to address his heart condition. Because he was not gaining weight as expected, surgery to repair his tetralogy of Fallot became a critical step in helping him grow and thrive.

Next, My’Aire began treatment at CHOP’s world-renowned Craniofacial Program. Jesse A. Taylor, MD, CHOP’s Surgeon-in-Chief and the Chief of the Division of Plastic, Reconstructive and Oral Surgery, collaborated with the program’s multidisciplinary specialists to create a comprehensive care plan for My’Aire.

Dr. Taylor identified plagiocephaly, often referred to as a flat spot on the head, and My’Aire underwent helmet therapy for nine months. He later underwent multiple surgical procedures to address the effects of Goldenhar syndrome, including treatment for his cleft palate and underdeveloped jaw.

Throughout it all, his care was carefully coordinated among specialists working together to support his growth and development. The Craniofacial Program’s nurse navigator, Alexis S. Brandemarti, BSN, RN, was always available to answer questions and offer guidance throughout the treatment process.

Building a new ear

One of the visible effects of My’Aire’s Goldenhar syndrome was microtia of the left ear, a condition in which parts of the external ear do not fully develop.

As he grew older, My’Aire and his family met with Cassandra Ligh, MD, a plastic and reconstructive surgeon at CHOP who specializes in ear reconstruction.

There are several ways to reconstruct an ear. Through discussions with Mecca and My’Aire, Dr. Ligh developed a staged plan to reconstruct My’Aire's ear. He underwent tissue expansion followed by ear reconstruction using donated rib cartilage.

The process required additional surgeries and recovery time, but My’Aire approached each challenge with remarkable determination.

“He's been so resilient through everything,” Mecca says. “He’s always overcome it.”

Looking ahead

While My’Aire’s medical journey is ongoing and may include orthodontic treatment and additional jaw surgery as he gets older, his life today is about much more than doctor visits and procedures.

The 7-year-old enjoys anime, action figures and video games. He plays soccer, is learning keyboard and guitar, and is doing well in school.

For Mecca, watching her son grow into an active, confident child has been inspiring. Despite spending his earliest months in intensive care and facing multiple complex surgeries, My’Aire continues to meet each obstacle with the same resilience that has defined his journey from the beginning.