Making the decision: Choosing MAGIC for midaortic syndrome

PHOTO COURTESY OF THE RICE FAMILY/PHOTOS BELOW BY SOPHIE FABBRI AT BOSTON CHILDREN’S HOSPITAL

Several years ago, the Rice family wouldn’t have imagined that they would be traveling some 2,000 miles across the country for care. But after their youngest son, Quinn, was diagnosed with midaortic syndrome, they knew they had to make the trip. In this rare but serious condition, the part of the aorta (the heart’s largest blood vessel) that runs through the chest and abdomen is narrow, leading to reduced blood flow. Midaortic syndrome can cause dangerously high blood pressure and can be life threatening if left untreated.

Quinn’s local nephrologist in Utah had been successfully managing his blood pressure with medication. When medical treatment could no longer control his rising blood pressure, a series of recommendations and referrals brought him and his parents, Yasemin and Aaron, to the Midaortic Syndrome and Renovascular Hypertension Center at Boston Children’s Hospital. “It seemed daunting to be that far from home,” says Yasemin. “But we knew that it was the right choice.”

boy with midaortic syndrome and his surgeon
Quinn visits with Dr. Kim

Practicing patience

The decision to come to Boston was made easier when the Rices learned that Quinn was eligible for Mesenteric Artery Growth Improves Circulation (MAGIC). Developed at Boston Children’s, this surgical procedure bypasses the aorta by using the mesenteric arteries (the arteries that supply blood to the intestines) rather than prosthetic graft material. This can help prevent the need for future graft replacement procedures because the child’s arteries will naturally grow as they get older.

The family appreciated that the procedure used Quinn’s own arteries. Yet the operation, which was performed by Dr. Heung Bae Kim and Dr. Khashayar Vakili, didn’t immediately quell their concerns. Although they knew that it could take time for Quinn’s blood pressure to decrease following surgery, his parents still felt a sense of trepidation. “I freaked out a little bit afterward because the improvements were so gradual,” Yasemin admits. “I just hoped we had made the right decision.”

little boy with midaortic syndrome lies on exam table
Quinn visits with his nephrologist, Dr. Michael Ferguson

A home run

Today, nearly two months after Quinn’s surgery, that patience has paid off. “His blood pressure now is right where it should be,” says Aaron. “We haven’t seen it this low in a long time.” The couple say they’re grateful for the resources that helped them better understand midaortic syndrome and its treatment, from the advanced imaging scans that Quinn’s clinicians shared with them, to the experiences of other kids with this rare condition. “It really helped to read stories by parents whose children have been through the same thing,” he explains.

They also found comfort during their stay at the Yawkey Family Inn. “Quinn loved to meet the other patients that were staying there and learning of their stories,” says Yasemin. “It was so cool to meet people from all over the country — and world — that were being treated in Boston.”

While Quinn, now 9 years old, is taking a break until he’s fully healed, he’s looking forward to playing basketball and snowboarding in the future. And he’s got two more reminders of his time in Boston: a Red Sox t-shirt gifted to him by nurse Linda Pengeroth and a Celtics shirt from Jonette Jean-Louis. “He loves those shirts,” laughs Yasemin. “He never wants to take them off.”

Learn about the Midaortic Syndrome and Renovascular Hypertension Center. Read Quinn’s story in his own words tomorrow.