Twelve Months in the Life of a Baby Born with a Rare Condition Called CHAOS
Aydin, his parents’ “golden child,” needed the help of more than 25 specialists when he was being delivered.
Photo: James Yarusinsky
Yadi Martin was 24 weeks pregnant when she and her husband Jamaal learned that their son had a rare condition. Called CHAOS, for congenital high airway obstruction syndrome, the anomaly makes it impossible for air to reach the lungs. It has affected fewer than 100 babies in the United States since 1989; most did not survive.
After a complex birth by cesarean delivery, the Martins’ son Aydin would spend nearly six months in the Neonatal Intensive Care Unit at Tisch Hospital, part of Hassenfeld Children’s Hospital at Ƶ, and have several more lifesaving surgeries. More than a year later, and despite steep odds, this child born into literal chaos continues to thrive.
The Diagnosis: May 2021
Even after they learned of their unborn child’s condition, the Martins believed their baby would survive. Yadi had already experienced four miscarriages but felt certain of Aydin’s healthy future. “We believe this is our golden child,” she says. “He is our chosen one.” The couple decided to name the baby Aydin Idris, which means “enlightened, smart, and studious” in Arabic.
PHOTO: Courtesy of Yadi Martin
The Birth: August 3, 2021
The Martins arrived at Tisch Hospital for a surgical birth like no other. After delivering only the baby’s head and shoulders, a team of more than 25 specialists performed a complex and daring procedure called ex utero intrapartum treatment, or EXIT.
PHOTO: Joe Carrotta
The “EXIT” Strategy: August 3, 2021
Maternal–fetal medicine specialist Ashley S. Roman, MD, co-director of the Fetal Diagnosis and Treatment Program, and her team performed the EXIT procedure, partially delivering the baby. “We had to time it all perfectly because if the placenta separated before the airway could be established, the baby would not survive,” Dr. Roman says.
PHOTO: Joe Carrotta
Breath Is Life: August 3, 2021
During Aydin’s birth, doctors quickly discovered a worst-case scenario: His airway was totally blocked. With the newborn still receiving oxygen from his mother via the umbilical cord and placenta, pediatric otolaryngology expert Scott M. Rickert, MD, placed an oxygen tube through an incision in the neck and into the lungs. After delivery, another crisis struck: Aydin’s heart stopped beating and he went into cardiac arrest. Jason C. Fisher, MD, a pediatric surgeon and surgical director of the Pediatric ECMO Program, placed Aydin on a form of life support called extracorporeal membrane oxygenation (ECMO) to take over the work of his heart and lungs until they could function on their own.
PHOTO: Joe Carrotta
The Reunion: September 7, 2021
Aydin recovered in the NICU at Tisch Hospital, an elite unit long recognized for delivering the highest level of prenatal and newborn care. “Aydin was as critically ill as you can be,” says neonatologist Robert M. Angert, MD. He received around-the-clock care from two nurses; regular assistance from respiratory, physical, and occupational therapists; and additional support from a nutritionist, music therapist, and other specialists provided through Sala Institute for Child and Family Centered Care. More than a month after his birth, Yadi and Jamaal held their son for the first time.
PHOTO: Courtesy of Yadi Martin
“Graduation”: January 19, 2022
After 169 days in the NICU and numerous surgeries—including correcting a heart defect and repairing a malformation in the digestive tract—Aydin was declared healthy enough to leave the hospital. He spent the next six months in a rehabilitation center, continuing his recovery. “To see him leave felt like a graduation,” says Dr. Angert.
PHOTO: Courtesy of Yadi Martin
Home, at Last: July 11, 2022
At 11 months old, Aydin arrived home, and his parents finally got to witness firsthand what so many dedicated doctors and nurses had experienced. “When he was in the hospital, people would say, ‘He wakes up so happy.’ To be able to see it ourselves, it melts our hearts,” says Jamaal. “Seeing him smile is the best part of the day.”
PHOTO: Courtesy of Yadi Martin
Happy Birthday, Aydin!: July 22, 2022
Shortly before his first birthday, Aydin and his parents returned to Hassenfeld Children’s Hospital—34th Street for a reunion. “I feel so lucky to help families like the Martins have a baby and achieve their goals,” says Dr. Roman. Today, nearly two years after his birth, Aydin has begun walking and learning sign language. His parents find inspiration in his resolve. “If he can deal with all of this, how do we not do it?” says Yadi. “He’s just happy, and every day, he lets us know how happy he is.”
PHOTO: James Yarusinsky
