Kansas City's Children's Mercy Hospital now performs heart transplants, and its cardiac care outcomes are among the best in the nation.
Aliessa Barnes, M.D., Brian Birnbaum, M.D., Hannah Mountz and Sarah Bowmaker, R.N.
Since February, two children in the Kansas City area have had a second lease on life thanks to Children’s Mercy Hospital’s new pediatric heart transplant program at the Ward Family Heart Center. The first patient was Hannah Mountz, a 15-year-old girl, who received her surgery the day before Valentine’s Day. The second was performed less than a week later on a boy who is almost 2.
“I feel wonderful,” says Mountz, who is a junior at Staley High School in North Kansas City, where she plays the French horn in the marching band.
Mountz, who was diagnosed with dilated cardiomyopathy, said she was grateful for the experienced transplant team at Children’s Mercy and that she was able to be with an extended support group of family and friends before, during and after her Feb. 13 transplant.
Now, she mostly wants normalcy.
“I always have these setbacks immune system-wise, or having to wear masks in public sometimes,” she says, “but even when I get frustrated, even when I get so upset that I can’t do everything that a normal teenager can do, I just tell myself, ‘You could still be in such miserable condition.’ And I am just so glad that I am feeling so much better.”
Her experience has taught her profound life lessons.
“You don’t know how important each day is until something like that happens,” she says.
Dr. Aliessa Barnes, a pediatric cardiologist and the hospital’s medical director of cardiac transplantation, says both Mountz and the baby boy are progressing nicely. Three more transplant patients are on a waiting list for surgery this year.
“I love this medicine,” Barnes says. “I was thrilled to be able to bring this amazing service to an area of need. I am so thankful because when Children’s Mercy called and gave me this offer and said, ‘You know we will be behind you; we will give you all the resources you need to make this great,’ they have absolutely done that.”
Pediatric heart transplantation was a long time coming to Kansas City, says Barnes, who was recruited from the Children’s Medical Center in Dallas to lead the program. It received approval last November from the United Network for Organ Sharing, a nonprofit group that oversees organ allocation and transplant programs under a contract with the federal government.
Because of the addition of the transplant program, Children’s Mercy landed in U.S. News and World Report’s 2015-16 list of the top 50 best children’s hospitals for all 10 children’s hospital specialties, ranking 36th in Pediatric Cardiology and Heart Surgery. Last year, it ranked among the top 40 hospitals in 9 of the 10 categories.
Barnes spent her first few months here assembling a multidisciplinary team that includes a dietician, infectious disease physician, a psychologist, child-life nurse, social worker and a chaplain. Also instrumental to the heart transplant team was another nationally recognized physician recruited at the same time as Barnes, James St. Louis. He’s the surgical director of cardiac transplantation who came from the University of Minnesota Amplatz Children’s Hospital.
Children’s Mercy had been referring about six heart transplant patients a year to hospitals in St. Louis and Denver. Now, with heart transplantation available in Kansas City, patients no longer have to travel hundreds of miles without their family support systems nearby.
“It’s so exciting to be able to offer this here, to kids and families in Kansas City,” Barnes says. “When a family is going through this very difficult situation, they won’t have the added stress of possibly being alone in a foreign city without their support.”
Tanya Cromwell with son Isaac and Dr. Robert Adringer
The average time span for waiting for a heart is about three to nine months, but can be longer, Barnes says. Integral to the heart transplant program is the hospital’s new ventricular assist devices that support the patients waiting for a new heart.
Barnes predicts that within three to five years, Children’s Mercy will be doing at least 10 heart transplants a year.
“Pediatric heart transplant centers that do 10 or more transplants a year are considered large centers, whereas adult transplant centers will do hundreds of transplants a year,” she says. “Pediatrics is just a much smaller endeavor and really there aren’t any centers that do more than around 10 or 20.”
Kansas Citians are extremely generous when it comes to organ donation, she adds.
“It is spectacular compared to where I came from,” she says, noting that some adult hearts can be suitable for children. “This community is so loving, so giving. In Texas, when the people were approached to give donations, only about 30 percent would say yes. Whereas here, with the organ procurement organization — Midwest Transplant Network —, the rate is somewhere between 75 and 80 percent.”
She says her job brings “high highs and low lows” because of the many complications that can occur after a heart transplant. She quotes a one-year survival rate of 92 percent, with a 10-year survival rate closer to 70 percent.
“But there’s great satisfaction in being able to walk through the journey with the families and celebrate during the good times, and if we hit bumps in the road, hurdles, or the not-so-good, to be there to hold their hand to get through that as well,” she says.
Others at Children’s Mercy’s Ward Family Heart Center are equally thrilled with the new transplantation program.
“It’s exciting that now the capacity of what Children’s Mercy can offer is the same as any other high-end heart center,” says Dr. Robert Ardinger, a pediatric cardiologist. “This is a very difficult specialty to do. You have to have the support of all these people to care for these children well.
“The sense here, in 2015, is that there isn’t anything that we would not cover ourselves. We can do essentially everything, which now I guess puts us in the big leagues.”
Not that Children’s Mercy’s pediatric heart care doesn’t already have a reputation for quality. It attracts patients from as far away as the Philippines, with the majority coming from a five-state region in the Midwest.
Its highly skilled, multidisciplinary team includes more than 25 pediatric cardiologists and cardiothoracic surgeons, 24 advanced practice nurses, pediatric anesthesiologists, research laboratories, specialized cardiac clinicians, and other pediatric medical and surgical subspecialists.
In 2014, the heart team performed more than 400 surgical heart procedures, provided more than 12,000 cardiac outpatient visits, conducted more than 16,000 echocardiograms, and more than 500 catheterization and electrophysiology procedures. According to the Society of Thoracic Surgeons National Congenital Heart Surgery Database, the heart center’s outcomes are among the best of the 114 North American children’s hospitals.
Tanya Cromwell knows the hospital’s heart care well. Her son, Isaac, 11, has Down syndrome and was born with a heart defect corrected by surgery when he was 10 months old. Ardinger has been seeing Isaac since he was three weeks old. Now, Isaac goes for a checkup twice a year at its Overland Park clinic.
“There’s a high likelihood that children with Down syndrome have heart defects, so we thought Isaac might have one,” Cromwell says. “So he was in the hospital for an unrelated reason at three weeks, and they went ahead and did an echocardiogram.”
Sure enough, a heart defect was detected. Ardinger was quick to soothe her fears.
“I was a very nervous first-time mom,” Cromwell recalls. “He was very wonderful and patient and amazing, and he is such a good man and really cares about the kids.”
Isaac’s trachea was also repaired at the same time his heart was, resulting in a 9½-hour surgery.
“For being such an awful surgery, it could not have been a better experience,” Cromwell says. “They are great for parents, letting us stay in the hospital with him. He came out of it like nothing ever happened.”
Cromwell and her husband, who also have two younger daughters, Caroline, 9, and Anna, 4, says, “We’ve had such positive experiences with the cardiac department and the cardiac surgery department.”
Isaac’s thoughts on Children’s Mercy undoubtedly are equally positive. As he recently was prepped for an echocardiogram, the redheaded youngster grinned at his technician as if to say, “Thanks for taking such good care of me.”