CLEVELAND — Louis McFaye is a happy, healthy 10-year-old boy who loves to cook, play football and video games, build Legos and hang out with his family. But keeping a big smile on his face hasn’t been easy.
Most of Louis' childhood has been challenging. Since he was born, he’s had severe problems with eating and breathing.
“I noticed something when he was a baby,” said his mom, Adrienne McFaye. “He wouldn't, he wouldn't lie in his crib. He could not lie in his bed, and I had to sit up with him for him to get any sleep.”
She said doctors dismissed her concerns, blaming colic, but as Louie got older, his symptoms began to get worse.
“I felt like something was wrong with me,” Louis said. “And I didn't know what was going on.”
He had trouble swallowing food, especially solids. Playing sports and running around with his friends was more of a chore than fun.
“He would wheeze and get out of breath very easily,” Adrienne said. “We would just be biking for about five minutes, and he'd have to stop and drink a lot of water.”
Test after test, everything came back seemingly normal, but Adrienne refused to give up. Her motherly intuition told her something was wrong with her son. At age 7, finally they received an answer. Doctors figured out Louie was born with a double aortic arch, a rare vascular ring malformation that wrapped tightly around his trachea and esophagus.
“A double aortic arch is where you have one blood vessel that comes up branches into two, one goes to the right of the trachea and esophagus and one to the left, and they meet in the back and rundown,” said Christopher Baird, a heart surgeon at Boston Children's Hospital. “And then in that middle part is the part that's pinched, squeezed or causes these compressive symptoms.”
Adrienne wanted to seek the best care for Louis’ rare condition, so after multiple opinions, she took him to Boston Children’s Hospital.
“I went to three hospitals before I found the right answer for me, and you want to get the best care for your child,” Adrienne said.
Louis finally had the surgery that changed his life, undergoing an extensive procedure on his heart, esophagus and trachea.
“We were able to fix it by dividing the one of the two arches or the extra arch, and moving the scar tissue out of where it was and rearranging things to a more natural position, and things went well,” said Benjamin Zendejas-Mummert, a pediatric surgeon at Boston Children's Hospital.
Louis had lived nearly 10 years of his life with a feeling similar to being choked, with no explanation. After surgery, he said he woke up feeling like a whole new child.
“I felt like I'm the king of the world. I was like screaming, 'I’m free!'" Louis said. “I can be an athlete. I could do whatever I want to be when I grow up and be happy.”
Now, Adrienne said Louis eats more than he ever has, can play with his friends without getting out of breath and no longer struggles to keep a big smile on his face.
He finally has his life back, and Adrienne has peace of mind.
“I’m hopeful and optimistic for Louie because I know he can do so much,” Adrienne said. “He is such a brave, brave boy to go through all this.”
Adrienne wants other parents and guardians to learn from her experience.
“I'm thankful for my mom,” Louis said.