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Rare heart defect means multiple surgeries for 7-year-old boy

Posted on Feb. 10, 2016 ( comments)
Trish Materi and Evan Capps

Trish Materi and her 7-year-old son, Evan. Evan has been through multiple open-heart surgeries for a rare heart condition called Tetralogy of Fallot.

By Cheryl Reid-Simons

For most children, the big milestones are the same: first tooth, first steps, first day of school. But Trisha Materi added a few to her list for her 7-year-old son Evan: first echocardiogram and first open-heart surgery.

Doctors at Mary Bridge Children’s Hospital diagnosed Evan Capps with Tetralogy of Fallot (ToF), a congenital heart defect, when he was just 4 months old.

ToF is the most common congenital heart defect to cause low oxygen levels. It is actually four separate structural defects that send oxygen-poor blood to the rest of the body. Evan has the most severe variation of ToF, including pulmonary atresia and MAPCAs (major aorto-pulmonary collateral arteries).

No obvious signs of a problem

Evan’s birth wasn’t unusual and he didn’t seem to show any symptoms of a major heart defect. Some blood in his stool and spit-up led to an appointment with Evan’s doctor.

His pediatrician noticed a mild heart murmur, but didn’t think it was a problem. He referred Evan to a gastroenterologist to check for allergies.

The GI doctor took a look and noticed Evan’s coloring seemed off, so he tested his oxygen saturation levels. A normal level of oxygen in the blood should be close to 100 — Evan’s was just 65.

Evan's family rushed him to Mary Bridge while the doctor called ahead to alert the emergency room.

Trish Materi and Evan Capps

“They couldn’t even believe he was conscious because his oxygen levels were so low,” Materi says.

X-rays confirmed that Evan had a boot-shaped heart typical of Tetralogy of Fallot. Doctors explained that he would have to undergo several surgeries.

His first surgery was at Mary Bridge, and was successful.

“One of nurses said Evan was one of sickest of sickest kids that ever survived,” Materi marvels.

Rebuilding Evan’s heart

Evan's family drove him to Stanford Medical Center nearly two years later for a full repair. (Evan can’t fly because of his pressures.)

In a 14-hour surgery, doctors there essentially rebuilt his little heart, adding material to make up for arteries that were too tiny to work. It was a challenge keeping an active toddler calm and safe in a scary new place with temporary pace wires coming directly out of his skin.

Today, Evan is fast approaching his next trip to Stanford and his third open-heart surgery, which brings a new set of challenges. This will be the first that he actually remembers.

“He has a ton of questions,” Materi says. “‘What does it mean? How do they get inside my body?’ He’s a very smart child, very inquisitive.”

But that brings its own challenges.

“How do you answer that for a 7-year-old and not scare him?” she asks.

Materi reminds herself of what she tells Evan:

“You’re special. God has you here for a reason and you’re going to get through it.”

Although Evan faces multiple open-heart surgeries and other procedures, Materi says her little boy “gets to lead a pretty normal life.”

They do take precautions, though, since even common illnesses can be life-threatening.

“He goes to school but we are still cautious,” she says. “It’s a fine line. I want him to lead a normal life but I need him to be healthy. Ultimately he needs to live. We use a lot of wipes, a lot of Purell, a lot of vitamins and a lot of prayers and do the best we can.”

Materi has a simple message during Congenital Heart Defect Awareness Week:

“I’d love to raise awareness of congenital heart defects. Most people have no idea what these little ones go through.

“They are so strong and brave and courageous and I am blessed beyond measure.”

Posted in: Cardiac | Patient Stories
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