Monique Gabrielle Maes-Salazar opens her sketch book and begins drawing the outline of a human body with a thick, black Sharpie pen. Next to her on the couch, Karina Loredo stares intently at the page, trying to understand a surgery that, she's been told, could help keep her son alive.
This past summer, Eduardo Loredo was diagnosed with dilated cardiomyopathy, a serious condition that enlarges the heart and makes it difficult to pump blood effectively.
When Eduardo was released from Children's Mercy Hospital in October, his doctor wrote a letter suggesting that a heart transplant would be the teenager's best chance at a normal life.
Last week, Loredo says, Children's Mercy officials suggested another option.
Maes-Salazar, a recent graduate of the University of Missouri-Kansas City and advocate for the Loredo family, draws a heart inside the human outline. Two lines then connect the organ to a small machine embedded just below the left shoulder. As she sketches, Maes-Salazar explains how CRT -- or cardiac resynchronization therapy -- uses a small, surgically inserted pacemaker to coordinate the two chambers of the heart with electrical pulses.
Loredo nods. She's still trying to absorb the technical information. The day before, she says, a doctor at Children's Mercy Hospital told her Eduardo might be a candidate for CRT. She says the operation wasn't explained to her in detail, but that the doctor cautioned her that the surgery is generally performed on adults, not children. In addition, she says the doctor warned her that undergoing anesthesia could be very dangerous, even fatal, for Eduardo in his weakened condition.
Loredo pulls out a piece of paper with the logo of Children's Mercy, with the names of two anesthesiologists circled. She says hospital officials told her to call those doctors and contact other cardiologists to get a better understanding of the operation and its risk. Loredo says the Children's Mercy doctors didn't tell her if CRT would be a permanent solution for Eduardo's heart condition or simply prolong his life as he waits for a transplant. They also didn't say anything about the cost, Loredo adds.
Loredo says she doesn't feel like she has enough information to make such a crucial decision. But she has little time to gather facts. It's Thursday afternoon. Children's Mercy officials, she says, want to meet with her the following Monday.
James Cox, president of the humanitarian World Heart Foundation and physician at Washington University in St. Louis, says CRT is the first line of therapy for heart disease in adults. But it's far from a sure-fire solution. "CRT works 50 percent of the time," Cox says. "The other 50 percent it doesn't, and it's impossible to tell which patients will do well and which won't. It's a multi-billion-dollar market for companies that make those devices, but I've been fairly disappointed with the results."
Historically, CRT has been confined to adults, though recent studies have begun to investigate how the procedure fares in children. Research published in the Journal of the American College of Cardiology in 2005 found that, of 18 children who underwent CRT while waiting for a heart transplant, three improved so dramatically that they were taken off the transplant list. Another study, published in Current Cardiology Reviews in January 2009, reported: "The role of CRT in children with CHF [congestive heart failure] is still unclear. Evidence is slowly emerging in the pediatric cardiology literature that CRT may have an important and useful role in certain select populations with CHF."
Loredo has plenty of questions about the procedure. Because of the medical complexity, she hopes to bring her own advocate -- Will Suarez, a student at Johnson County Community College -- to her next meeting with Eduardo's "care team" at Children's Mercy. But the Monday meeting doesn't happen. As of last night, Loredo was still trying to reschedule.
Sherry Gibbs, a spokesperson for Children's Mercy, declined to comment.
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