Danny Kirby started developing breathing problems shortly after he was born in August 2008. He was put on a ventilator to help him breathe better. His initial diagnosis was pulmonary hypertension, or abnormally high pressure in the blood vessels of the lungs.
However Danny’s condition deteriorated and he was transferred to Johns Hopkins Children’s Center, where he was diagnosed with AVM, or arterio-venous malformations, also called vein of Galen. The condition is marked by abnormally connected blood vessels in the brain. The abnormal connections can compromise blood flow in and out of the brain, leading to problems with other organs. In Danny’s case, the AVMs led to congestive heart failure and pulmonary hypertension.
LISTEN to Danny's Story - Radiothon 2011
Danny spent the first 49 days of his life being shuttled between Howard County General and Hopkins Children’s. At the Hopkins Children’s neonatal intensive care unit (NICU), Danny underwent two embolization procedures to restore normal blood flow in the brain. Using a catheter to access his brain arteries, doctors inserted metal coils and glue to close the vessels that were feeding blood into the malformation. Danny’s condition improved dramatically after the second procedure. Once he was stable and feeding normally, he went home. Since then, Danny has undergone three more similar procedures, performed by interventional neuro-radiologist Philippe Gailloud. After each procedure, he had to spend time recovering in the pediatric intensive care unit (PICU).
Danny needs yearly MRI tests to track his AVM and determine if he might need more surgeries. He remains under the watchful eye of his primary neurologist, Lori Jordan, who tracks his overall development.
The AVM did cause some atrophy and damage to Danny’s brain, resulting in some developmental and gross motor delays. Danny receives weekly physical therapy as part of the Infants and Toddlers program through Howard County Public Schools.
Despite some physical limitations, Danny is a smart and happy child with great memory skills and a charming sense of humor. He enjoys reading, singing songs and going for strolls in his Gait Trainer.
Danny has spent a lot of time in Hopkins Children’s during the first two and a half years of his life where, his parents say, “he has received the best care that we could have ever imagined.”