Massive spread

“It was becoming tangled into every structure in her neck and crawling down into her chest,” said Mai Thy Truong, MD, a pediatric otolaryngologist now with the hospital’s vascular malformations clinic, which treats children with hemangiomas and other vascular tumors. At the time of Isabella’s treatment, Truong was completing an otolaryngology fellowship under Chang’s tutelage and was closely involved in Isabella’s care.

To everyone’s surprise, Isabella’s breathing improved in the first 24 hours on the medication. A week later, she received another MRI.

“Dr. Chang came and found us and said, ‘You’ve got to see this; the tumor shrunk in half,’” Julie Anna recalled. “We were just beside ourselves.”

Desperate for answers, Chang recalled a conversation he had heard at a recent medical conference. Some physicians in France had accidentally discovered that a blood pressure medication, propranolol, shrank skin hemangiomas in a few children with high blood pressure who coincidentally had the skin version of the tumor. To Chang’s knowledge, no one had ever used the drug to treat an airway hemangioma, but Isabella’s situation was so dire that he wanted to try. The Manleys agreed.

“We found, to our horror, that this hemangioma was massive, surrounding her entire windpipe and also her heart,” Chang said.

After enduring such a long struggle to help Isabella breathe, the Manleys cried happy tears. “It was one of the best days of our lives,” Todd said.

“When I saw that MRI, I was devastated,” said Truong, who is also a clinical assistant professor of otolaryngology at the School of Medicine. The tumor was too extensive for surgery and was still growing. Truong and Chang feared that it would soon block Isabella’s airway. They were not sure they could save her.

“It was the worst time for us,” Todd said. “The clock was really ticking: her breathing was becoming more labored and the treatments were not working.”