All roads lead to Boston for South Carolina parents-to-be

Vein of GalenWhen you’re a South Carolina couple expecting your first baby, the prospect of a two-day, 1,000-mile road trip to deliver your bundle of joy seems far-fetched.

“Boston is not next door,” concedes Tradd Martin. “But after talking about the pros and cons, it was an easy decision.”

Tradd and his wife Jean decided to deliver their son Alex at Brigham and Women’s Hospital after doctors detected a Vein of Galen malformation, a rare blood vessel abnormality in the brain, during a third-trimester ultrasound.

“I was 32 weeks pregnant, and everything was going great. We even debated not doing the ultrasound, but a little something was telling us, ‘Go ahead,’” recalls Jean.

The ultrasound technician told the Martins she was concerned about an area in Alex’s brain, and the obstetrician diagnosed the couple’s unborn son with a Vein of Galen malformation.

“Our whole world turned upside down,” says Jean. She started researching the condition online to try to find some answers. “There was hardly anything on the Internet, except for Boston Children’s Hospital.”

Jean had one more thought. Her mother had been treated for a brain aneurysm at New York University in 2009. The grandmother-to-be emailed her physician Dr. Tibor Becske.

Finding a Vein of Galen malformation specialist

Becske wrote back, offering to put the Martins in touch with Dr. Darren Orbach, division chief of Interventional and Neurointerventional Radiology and co-director of the Cerebrovascular Surgery and Interventions Center, at Boston Children’s. Orbach is the Vein of Galen specialist, Becske told the family. Two hours later, at 8 p.m. on a Saturday night, Orbach emailed the couple.

He recommended a fetal MRI, which then confirmed the initial diagnosis.

“Dr. Orbach told us the best thing to do would be to come to Boston and deliver Alex at Brigham and Women’s. That way, if anything went wrong at birth, he and his team would be right next door and could take care of Alex immediately,” says Jean.

The earliest threat to babies with a Vein of Galen malformation is that blood flows from the abnormal vessel to the heart at a very high rate. “The heart has to work overtime to provide normal blood flow to the rest of the body,” explains Orbach. This is why babies with the malformation are born with an enlarged heart. Babies with the most severe effects of the malformation can develop heart failure within one to two days of birth.

And that’s why the South Carolina couple wound up making a 17-hour drive to deliver their son.

After Alex’s birth on Aug. 18, 2015, he spent five days in the Neonatal Intensive Care Unit at Brigham and Women’s Hospital, where Orbach monitored him.  Alex’s heart was a little enlarged, but he didn’t show any signs of heart failure.

Vein of Galen

Getting ready for Alex’s Vein of Galen malformation surgery

“Alex did really well. I suggested we postpone the embolization until he was three to six months old. Older infants’ blood vessels can better withstand the large changes in blood flow that come with treatment of the Vein of Galen malformation, compared to a newborn’s, which are very delicate. On the other hand, we don’t like to wait until the baby is older than six months because the risk of developmental impacts increases,” explains Orbach.

Jean and Tradd scheduled Alex’s surgery for December and took Alex home. Orbach and team kept close tabs on the youngest member of the Martin family.

“Dr. Orbach’s team was one of the first to call after the three-day car ride back to South Carolina,” says Jean.

Alex’s pediatrician, Dr. Deborah Greenhouse at Palmetto Pediatrics, monitored his Vein of Galen malformation via ultrasound and sent weekly reports to Orbach.

When one of Alex’s ultrasounds indicated his Vein of Galen malformation had grown, Orbach suggested an MRI to provide a clearer picture of Alex’s head.

He emailed the Martins with the results at 7 p.m. on a Friday night. “He told us ‘It’s good news. Alex’s malformation has grown minimally, but it’s in proportion to his own growth,’” recalls Jean.

The family returned to Boston on Dec. 5, 2015, for Alex’s surgery.

Vein of Galen malformation
The 3D model used to help plan Alex’s surgery

The embolization procedure began with an angiogram, where a small catheter is threaded from an artery in the upper leg to the arteries to the brain, followed by injection of contrast or dye, to map the blood flow to the malformation.

Once the abnormal vessels were identified, a second, thinner catheter is threaded through the first one, traveling into the deep vessels of the brain, at the point where the fast-flow arteries feed directly into the Vein of Galen malformation. Because of the size and particular flow properties of Alex’s malformation, Orbach used a recently developed platinum metal device (called a POD) to block the artery and then secured it with glue injected behind the device.

The Martin family at the Yawkey Family Inn after his surgery

Alex’s heart rate dropped from 135 beats-per-minute to a healthy 115 beats-per-minute immediately after the POD was placed. With so much less blood flow going to the malformation, Alex’s heart no longer needed to be overworked to provide the needed blood flow to the rest of his brain.

Alex was released from the hospital two days after his procedure, and the family returned to South Carolina in plenty of time to celebrate his first Christmas at home.

“The outlook for Alex is terrific,” says Orbach, who will continue to monitor Alex from Boston and recommend follow-up care as needed.

“When this started in June, we were so scared at the thought of traveling to Boston for care. Looking back on it, we wouldn’t have done it any another way. Boston is a second home for us now,” says Jean.

Learn more about the Boston Children’s Cerebrovascular Surgery and Interventions Center.