The mighty Quinn: What it’s like to have midaortic syndrome

little boy with midaortic syndrome waits in his doctor's office
PHOTOS: SOPHIE FABBRI/BOSTON CHILDREN’S HOSPITAL

My name is Quinn and I’m 9 years old. When I was younger, my doctors noticed that my blood pressure was really high — and little kids shouldn’t have high blood pressure. My mom and dad took me to our hospital here in Utah and we found out that I have a really rare condition called midaortic syndrome. That means one of the tubes connected to my heart is too narrow.

I took medication for a long time to keep my blood pressure from getting too high. But midaortic syndrome made it hard to keep up with my friends and my big brother and sister. At my school, we start every P.E. class by running a lap around the track, but I had to walk with the teacher because of my blood pressure.

After about four or five years, the medication wasn’t really helping anymore. My doctors told me and my parents that I would probably need a kind of surgery called a bypass. Then we learned about an operation called MAGIC, which is more natural. It uses your own arteries to do the bypass. We came to the Midaortic Syndrome and Renovascular Hypertension Center at Boston Children’s Hospital, because it’s the only place that offers MAGIC.

little boy with midaortic syndrome blowing a bubble

A fun place to be sick

I had my operation in September with Dr. Heung Bae Kim and Dr. Khashayar Vakili. I wasn’t too scared before the surgery, because I was ready to start feeling better. I want other kids to know that it’s okay to be afraid, but the operation is worth it. Right afterward, it hurt for a while and I felt kind of wobbly, like walking on a boat. But I’m feeling better now.

Plus, Boston is a pretty fun place to be sick. My dad and I went to two Red Sox games and visited Faneuil Hall and Bunker Hill. My dad’s shoes are worn out from all the walking we did! I even liked the hospital, especially Seacrest Studios. My favorite people at Boston Children’s are my friends Linda Pengeroth and Jonette Jean-Louis — even though they aren’t as good at blowing bubbles with gum as I am.

little boy with midaortic syndrome poses with his family
Quinn (in plaid shirt) with his family [PHOTO COURTESY OF THE RICE FAMILY]

‘You won’t have to feel left out’

I’m still recovering from my operation and Dr. Kim says I’ll have to wait awhile until I can start playing sports like basketball and hockey. But I already feel little better — and I have a pretty cool scar. If you’re a kid who likes to run and play tag or other active games, you might notice a difference after surgery, too. You won’t have to feel left out at school anymore.

I’m happy to be home in Utah now with all my family and friends, but I have little pieces of Boston with me. I have a really cool Red Sox t-shirt that Linda gave me, and a foul ball that I got at one of the games. I’m even planning to play “Sweet Caroline” for my piano recital — right after I learn the “Ghostbusters” theme song.

Learn about the Midaortic Syndrome and Renovascular Hypertension Center. Read about Quinn’s experience from his parents’ perspective here.