Amanda and Arthur Brown smile with their son AJ in their backyard in Zebulon, NC.
During a routine ultrasound, Amanda Brown, age 29, learned her unborn baby had a rare brain abnormality called a vein of Galen malformation, which can cause developmental delays and life-threatening complications. Brown’s doctors referred her to Duke -- one of the few centers on the East Coast with the staff and expertise required to treat vein of Galen malformations. At six months old, baby AJ had a minimally invasive procedure that reduced blood flow to the malformation and stopped its growth. Today, AJ is a healthy, happy one-year-old with a bright future.
Delivery at Duke and Follow-Up Care
When AJ was born at Duke University Hospital in October 2021, a team of specialists was waiting to assess him. Since vein of Galen malformations (VOGMs) affect blood flow in the brain and other major organs, oxygen isn’t always distributed well throughout the body. This can lead to heart failure and other serious complications. Sometimes babies need treatment immediately after they’re born. Other times, it’s better to wait.
Guided by neurosurgeon Erik Hauck, MD, who specializes in treating vein of Galen malformations and other problems that affect blood vessels in the brain, the team determined AJ did not require immediate treatment and could go home. Over the next six months, AJ’s pediatric cardiologists, neurologists, and therapists checked on him regularly through phone calls and clinic visits.
Brain Procedure Today, Home Tomorrow
In the Spring of 2022, a follow-up MRI showed that AJ’s vein of Galen malformation had grown. “It suggested that the malformation was picking up flow, and we were worried about his development in the future,” Dr. Hauck said. He recommended a highly effective, minimally invasive procedure called endovascular embolization. Although AJ’s parents were nervous, they agreed it was the right move.
During the procedure, Dr. Hauck inserted a tiny tube called a microcatheter into one of AJ’s blood vessels and guided it to the malformation in AJ’s brain. Then Dr. Hauck used medical-grade glue to shrink the opening, which choked off the malformation’s blood supply and redirected blood back to the organs. Since the procedure only requires one tiny incision, AJ left the hospital the next day.
Since then, AJ has barely missed a beat, according to his mom. He’s thriving and meeting all his developmental milestones right on schedule.
“He is a beautiful little baby. He's walking already, he's taking his first steps. He says, 'Mama,' he says, 'Dada,'” said Dr. Hauck. “His strength and coordination, feeling, facial expression, smile, all of that is perfectly normal, so he is really growing up nicely.”
Duke Offers Treatment Closer to Home
Only a handful of hospitals in the U.S. treat vein of Galen malformation because it’s such a complex condition and requires a highly delicate procedure, Dr. Hauck said. It’s important to seek care at a place like Duke that has a team of experienced specialists. Brown -- of Zebulon, NC -- was grateful to have the care her son needed just an hour’s drive away.
“I heard about a lot of people who traveled pretty far, back and forth," she said. “I was just so thankful that care was already here.”