Patient Story: Surviving a Highly Rare Syndrome

Patient Story: Surviving a Highly Rare Syndrome

After a rare condition, a dangerous birth, several surgeries and 169 days in the NICU, Aydin is smiling.

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.

Several members of Aydin’s care team gathered at Hassenfeld Children’s
Hospital at NYU Langone to reunite and wish him a happy first birthday.

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.

The Martins arrived at Tisch Hospital, part of Hassenfeld Children’s Hospital at NYU Langone, 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 procedure called ex utero intrapartum treatment, or EXIT, partially delivering the baby. Everything had to be timed perfectly—if the placenta separated before the airway could be established, the baby would not survive.

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 Rickert, M.D., 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. The team placed Aydin on ECMO to take over the work of his heart and lungs until they could function on their own.

“He was as critically ill as you can be,” says neonatologist Robert M. Angert, M.D. 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. More than a month after his birth, Yadi and Jamaal held their son for the first time.

After 169 days in the NICU and numerous surgeries, 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 Angert.

At 11 months old, Aydin arrived home, and his parents finally got to witness firsthand what so many of his doctors and nurses had experienced. “When he was in the hospital, people would say, ‘He makes us 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.”

Shortly before his first birthday, Aydin and his parents returned to Hassenfeld Children’s Hospital for a reunion. 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.”

The original version of this article was published by Hassenfeld Children’s Hospital at nyulangone.com.

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