Children’s Mercy Hospital will open a pediatric heart transplant program

Children’s Mercy Hospital will announce Friday that its long-awaited pediatric heart transplant program is open for business.

The hospital said it recently received approval for the program from the United Network for Organ Sharing, the nonprofit group that oversees organ allocation and transplant programs for the federal government.

The Children’s Mercy program joins more than 50 other programs nationwide performing heart transplants on patients under age 18. Those programs did 404 procedures last year.

Having heart transplantation available in Kansas City will mean that many patients will no longer have to travel hundreds of miles for the surgery, said Aliessa Barnes, the hospital’s recently recruited heart transplantation specialist. Children’s Mercy had been referring about six heart patients each year to transplant programs in Denver and St. Louis.

“It was really hard for them,” Barnes said. “They usually would have to live in those cities. And many times, these are kids who’ve had previous surgeries. Their whole care team (at Children’s Mercy) feels like part of the family, too.”

Barnes previously was medical director of heart transplantation at Children’s Medical Center of Dallas. She will supervise care of patients before and after transplant surgery. The operations will be performed by James D. St. Louis, a surgeon who previously directed heart transplantation at the University of Minnesota’s children’s hospital.

Barnes said she expects Children’s Mercy to perform five to seven heart transplants per year at first. Within a few years, that number could roughly double, she said.

“I am hoping we do the first before the end of the year,” she said.

When Children’s Mercy announced early in 2011 that it was pursuing a heart transplant program, the expectation was that the hospital would eventually be doing 20 to 25 transplants each year, placing it among the largest programs in the country.

“I think those were pretty bold” projections, Barnes said. The program will need to start small, referring high-risk cases to other hospitals until it’s working smoothly, she said. And, she added, any program performing more than 10 transplants per year is considered large.

Planning for the Children’s Mercy program, which will encompass heart-failure care and heart transplantation, has been underway for more than five years. The hospital currently provides care for 50 to 60 heart-failure patients, some of whom will eventually need a heart transplant, as well as 20 to 25 patients who received heart transplants elsewhere.

Most children who need heart transplants either have congenital defects or suffer conditions that affect the heart muscle’s ability to pump blood, Barnes said. Children ages 5 and under and those in their teens receive the most heart transplants.

More than 300 children nationwide are on the waiting list for a heart transplant.

Barnes said she was hopeful that children in the Kansas City region might have to wait just months for a heart, rather than the years it can take in Dallas. Children’s Mercy will be the only hospital in this organ donor region that will be seeking the hearts and so will be the first to be offered the organs when they become available, she said. And, she said, the Kansas City region always has been generous in donating organs.

For children who may have to wait an extended time, Children’s Mercy will offer ventricular assist devices, implantable pumps that help support blood flow in people with weakened hearts.

“It’s an amazing tool,” Barnes said. “Kids can eat normally, exercise and be stronger when they have their transplant.”

Children’s Mercy also provides kidney, liver, intestinal, bone marrow and stem cell transplants.

This story was originally published November 6, 2014 at 6:01 PM with the headline "Children’s Mercy Hospital will open a pediatric heart transplant program."