Celebrating the Anniversary of a Life-Saving Brain Surgery

Hugs and hand-made cards, smiles and tears of joy. That’s how Carter Leinberger, age 8, and his family celebrated the eighth anniversary of his first surgery with Alejandro Berenstein, MD, Professor of Neurosurgery, Pediatrics and Radiology at the Icahn School of Medicine at Mount Sinai and Co-Director of Pediatric Cerebrovascular Disorders Program at Mount Sinai Health System. The procedure treated a congenital brain malformation.

The family has commemorated the anniversary every year since that first surgery in 2014, when Dr. Berenstein, a renowned pioneer in his field, performed a procedure that slowed a dangerous swelling in Carter’s brain.

“Carter had other surgeries, but we celebrate the first one because it was a huge turning point,” says Carter’s mother, Jamie. Normally, the event is low-key. “He just gets to pick dinner, and we talk about thankful we are for the doctors,” Jamie adds. This year, the family decided to do something special.

They made an appointment for September 22, then traveled from their home in Ohio to see Dr. B, as they call him. Arriving early, they went to Central Park, to the spot where they had spent hours waiting for Carter to come out of surgery. Carter and his sister ran off to play. “We never thought we’d see Carter running around on that playground,” says Jamie.

When the family went to Dr. Berenstein’s office, Carter gave him a white stuffed teddy bear with a tag reading: “You are my hero.” His sister brought a bag of Life Savers, and parents Todd and Jamie handed over a huge basket of buckeyes, symbolizing the Buckeye state of Ohio, for the entire medical team. “Dr. Berenstein is always saying it isn’t him, it’s the whole team,” says Jamie. “We wanted to honor them all.”

Dr. Berenstein was thrilled to see how well Carter is doing. “Seeing him at eight years old, having first met him when he was a tiny baby, makes every part of what we do worth it.” He sat with Carter to show him the imaging from when he was an infant. “It was his favorite part of the visit,” says Jamie.

Carter’s medical journey began in Ohio at his two-month check-up. His pediatrician noted that Carter’s skull was growing about four times as fast as it should. The pediatrician ordered an ultrasound, which showed hydrocephalus, an abnormal buildup of cerebrospinal fluid (CSF) in the ventricles deep within the brain. Then, a magnetic resonance imaging (MRI) test showed that Carter also had a vein of Galen malformation (VOGM), an extremely rare condition that had probably been present from birth.

Patients with VOGM lack the small blood vessels (capillaries) that slow blood flow from high-pressure arteries to low-pressure veins. Without the capillaries acting as a brake, blood rushes to the veins, expanding them and pooling. A blood rush to the heart and lungs can lead to heart failure. When blood floods the brain, it can cause hydrocephalus. Prompt treatment is key for VOGM; without it, fewer than 10 percent of infants survive their first year.

An Ohio hospital treated Carter’s hydrocephalus by surgically implanting a ventriculoperitoneal (VP) shunt, the standard approach. This thin plastic tube drains excess fluid from the brain into the stomach; it will be in Carter’s body, draining fluid, for the rest of his life. By getting rid of the extra fluid, the VP shunt prevents pressure from building up in the brain. Soon after its placement, Carter began experiencing seizures where he stopped breathing. The hospital intubated Carter to create a clear airway, then put him into a medically induced coma and treated him with medication. A follow-up MRI showed Carter had experienced a hemorrhage, and his VOGM had grown larger since he got the shunt.

Carter’s doctors in Ohio recommended endovascular embolization, a minimally invasive procedure in which blood vessels are filled or closed to prevent bleeding or rupturing. But they had little experience performing the procedure because the condition is so rare.

Todd and Jamie decided Carter needed an experienced specialist, so they did research and decided on Dr. Berenstein. Dr. Berenstein is a pioneer in the field of interventional radiology, and he has designed medical devices that are used all over the world to treat vascular, or blood vessel, conditions.

Jamie and Todd contacted Dr. Berenstein and were overwhelmed by his kindness. “He said ‘How can I help? Do you want me to work with your doctor or do you want him to come here?’” says Jamie. “Other doctors had given up on Carter, but Dr. B just wanted to help.”

Carter was airlifted to New York City, with logistical help from Michelle Sorscher, RN, MSN, CPNP, Clinical Coordinator and Nurse Practitioner at The Mount Sinai Hospital’s Cerebrovascular Center. “Michelle was so calming and helpful,” says Jamie.

Dr. Berenstein and his team inserted a thin tube called a microcatheter into the femoral artery in Carter’s leg. Using X-rays, they guided the catheter through the blood vessels to the malformation, where they injected a medical-grade glue to close off blood flow. The surgery was 90 percent effective but, as with many patients, Carter needed several procedures for a full cure. Dr. Berenstein operated again on Carter in February 2015 and June 2015. In June 2016, they achieved total occlusion—complete success. 

These days, Carter plays baseball, basketball, soccer, and touch football. “He loves school. He's a happy, happy child living a wonderful life because of his doctors,” says Todd. The family wants to share their experiences with others. “It means a lot to us to show people that having the right doctors can lead to success,” says Jamie. “We want to provide hope for other families.”