Shortly after he was born in June 2001, Ethan started showing signs of jaundice. When the yellowing of his skin and eyes persisted for three months, the Glasers, who lived in Buffalo, New York, sought care at a local hospital, where a series of tests revealed that Ethan had biliary atresia.
The condition — in which a portion of the bile duct is damaged or missing — causes bile, a fluid that is essential for liver function and digestion, to accumulate in the organ.
While there are no medications for biliary atresia, there are two surgical interventions: the Kasai procedure and transplantation.
“My world was turned upside down,” Chad says. “We were told there was only one surgery at that time, the Kasai procedure, and we wanted to find the best place to do it.”
Through phone calls and research, the family found the late Dr. Peter Altman, pediatric liver surgeon and then chief of Pediatric Surgery at NewYork-Presbyterian Morgan Stanley Children’s Hospital.
Dr. Altman, a leader in the surgical management of biliary atresia, helped bring the procedure from Japan to the United States. The operation, though not a cure, can slow liver damage and delay or prevent the need for a transplant by removing damaged bile ducts outside the liver and replacing them with a loop of the infant’s own small intestine.
“I felt it was the utmost importance to have transparency in my son’s care, and to be surrounded by people who were knowledgeable, trustworthy, and had the experience. I was sold,” Chad says. “This was where we needed to be.”
The Glasers traveled to New York City, where Dr. Altman performed the Kasai procedure on Ethan on Sept. 9, 2001.