Zaire’s superpowered heart: ‘I am Iron Man’

Zaire, who had surgery for scimitar syndrome, poses in Boston Children's rooftop garden.
PHOTOS: SOPHIE FABBRI/BOSTON CHILDREN’S HOSPITAL

What do a 4-year-old from Brockton, Massachusetts and Marvel’s superhero Iron Man have in common? A lot more than you might think.

Iron Man faces a heart injury that nearly kills him, but creates a suit of armor that protects his heart and gives him superpowers. Zaire was born with scimitar syndrome, a rare condition in which the heart grows differently than normal. While he wears no armor, Zaire has developed his own superpowers — boundless energy and a super dynamic personality — after undergoing a new procedure to fix his heart at Boston Children’s Hospital.

“A friend of ours told Zaire about Iron Man, and now he totally relates to him,” says mom Krystel. “He tells everyone he’s Iron Man and shows them his scar.”

A heart murmur and fast breathing cause concern

Krystel and her husband Jean first noticed something different about Zaire when he was just a few weeks old.

“Our pediatrician heard a heart murmur at his first visit, and I was concerned because his breathing pattern seemed faster than my other kids’ had been,” says Krystel. When the pediatrician suggested doing an electrocardiogram (ECG) in her office after Zaire’s second visit, Krystel pushed to see a cardiologist. “It seemed like something was wrong and I thought he should be seen by a specialist,” she says.

Zaire, who had surgery for scimitar syndrome, hugs his brother while visiting Boston Children's rooftop garden.

That referral brought them to Dr. Susan Saleeb, a cardiologist at Boston Children’s Hospital.

“Our appointment was for 10 in the morning, and they ended up ordering a series of tests to find out what was wrong, so we were there all day,” says Jean. “It was a little scary, but we knew he was in good hands and they were taking their time to make the right diagnosis.”

Later that afternoon, Saleeb sat down with the anxious parents to explain Zaire’s condition in more depth. Some of the major veins in his heart, the pulmonary veins, were connected in the wrong direction, and an extra artery was sending too much blood to the lungs, making it hard for him to breathe. This meant his heart had to pump harder to work. He would need a catheterization as a baby to get rid of the artery and then surgery, but not right away.

Zaire, who had surgery for scimitar syndrome, poses in Boston Children's rooftop garden.

“Dr. Saleeb explained everything in detail and told us they would continue to monitor his heart until he was ready for surgery,” says Jean.

A new option for surgery

That day came in April of this year. Before the surgery, Krystel and Jean met with Saleeb and Dr. Christopher Baird, a cardiac surgeon at Boston Children’s to discuss a new procedure Baird has been using to treat kids with scimitar syndrome.

“Scimitar repairs have notoriously been challenging with somewhat limited success in keeping the pulmonary veins open,” says Saleeb. “We’re optimistic about this new technique and so far, it looks like Zaire had a great repair.”

Krystel and Jean would agree.

“The surgery all went so easily,” says Krystel. “The experience at Boston Children’s has been nothing short of spectacular from the beginning. Everyone has been so supportive and offered seamless care from top to bottom.”

Zaire, who had surgery for scimitar syndrome, poses with his family while visiting Boston Children's rooftop garden.

Although Zaire remained in the hospital for about four or five days after surgery, Krystel says he was back to his normal self the day after, putting his superpowers to good use. “The nurses from the Cardiac Intensive Care Unit (CICU) came to visit him on the regular floor because they loved his personality so much,” Krystel says with a laugh.

Since surgery, he’s been keeping his parents and three older siblings busy trying to keep up with him.

“We’ve been for two follow-up visits now, and Dr. Saleeb told us she doesn’t need to see him again for another year — she says he’s doing great,” says Jean.

Would one expect any less from a superhero?

Learn more about the Department of Cardiac Surgery.