The last thing Hannah Mountz remembers before passing out was, “Should I tell my grandma?”
That was about five weeks ago, as the 15-year-old Kansas City, North, girl sat in her room putting on makeup while her grandparents waited downstairs. Hannah felt what had become the frequent and unwelcome sensation of her heart skipping a beat. This time, a defibrillator that doctors had implanted in her chest shocked her heart five times, delivering five jolts of increasing voltage, before her heart beat normally.
Hannah was put into intensive care at Children’s Mercy Hospital. And on Feb. 13, she became the first patient to receive a heart transplant at the hospital.
It’s made an immediate and startling improvement in her life.
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“I didn’t know how bad I felt until I felt amazing,” Hannah said Friday before a Children’s Mercy news conference with her parents, Tim and Renita.
Her failing heart left her exhausted, winded. Her fingertips turned blue from lack of oxygen.
“I was so ready” for a new heart, she said. “I feel wonderful. I really do.”
Children’s Mercy in November opened its long-awaited pediatric heart transplant program after receiving approval 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 365 procedures in 2014.
Having heart transplantation available in Kansas City means many patients no longer must travel hundreds of miles for the surgery, said Aliessa Barnes, the hospital’s heart transplantation specialist. Children’s Mercy had been referring about six heart patients each year to transplant programs in St. Louis and the Denver area.
Barnes said Children’s Mercy already has another patient on the waiting list for a heart donor and expects to add two more next week. She said there’s little doubt that the hospital would perform at least five heart transplants this year, as she had predicted when the program was launched.
Barnes expects the wait for donor hearts to average about two to three months, a relatively short time because people in the Kansas City area are frequently willing to become organ donors, and the regional Midwest Transplant Network is highly successful at encouraging donations.
Children’s Mercy placed Hannah on the heart transplant list in December as a high-priority case. By then, her health had been declining for months.
She had been healthy all through her childhood. But a serious heart condition runs in Hannah’s extended family. When she was 13, her parents had her heart evaluated “just because we wanted to keep an eye on her,” said her father, Tim Mountz.
Doctors found the condition that has affected other family members: dilated cardiomyopathy. The muscle of her heart’s left ventricle, its main pumping chamber, was starting to stretch and grow thin, a condition that would make it harder and harder to pump enough blood. The condition is a common reason children receive heart transplants.
Hannah was placed on medication to increase her heart’s pumping power, and at first her heart condition wasn’t much of a problem. “Probably, for the first year, they wouldn’t have known if we hadn’t gotten her tested,” her father said.
But in July, on a drive to Gulf Shores, Ala., for a family vacation, Hannah began sensing an irregular beat of her heart. She started growing short of breath.
Hannah kept going to Staley High School, where she’s a sophomore. She was determined to stay in the marching band through the fall season. But her health was deteriorating fast. At times, she didn’t have the breath to blow her horn as she marched.
By Christmas vacation week, Hannah was at Children’s Mercy being evaluated for a heart transplant. “It was very shocking,” Hannah said. “If someone had told me a year earlier, I wouldn’t have believed it.”
Hannah stayed at the hospital for about two weeks. She played Christmas music on her horn. Nurses and the families of other patients would gather by her door to listen. While she was hospitalized, doctors implanted a defibrillator, about the size of a pocket watch, under the skin of her chest to give her a jolt just in case her heart rhythm became dangerously unstable.
Hannah returned to school but realized after one day that it was too much. She started staying home, trying to keep up with classwork and make it to band practice.
On Jan. 21, when her defibrillator fired, her grandmother heard the thud of her fall and ran to her side. Hannah had the first ambulance ride of her life.
Doctors at Children’s Mercy decided Hannah would have to stay at the hospital until she had a new heart.
It became a waiting game. The Mountzes’ extended family — grandparents, aunts, uncles, cousins — and friends, co-workers and church pastor visited regularly.
During the Superbowl halftime show, the Mountzes were notified that a donor heart had become available. “Everything on paper was a perfect match,” Tim Mountz said.
Hannah was readied for surgery. As she lay sedated on the operating room table, a Children’s Mercy surgeon was at another hospital where doctors were examining the donor.
“I was so ready to feel good,” Hannah recalled. “I was so ready to feel good.”
Then Hannah heard someone in the operating room say, “Hold up on the anesthesia.”
The donor heart was in bad shape, the surgeon had discovered, in far worse shape than would normally be expected in people under 40, the usual age limit for donors considered for pediatric heart transplants.
It was an enormous letdown. Family members and friends had gathered at Children’s Mercy, anxiously awaiting the outcome.
The next day, it was just Hannah, her parents and her 12-year-old brother, David.
“We grieved together,” said her mother, Renita Mountz. “We knew we couldn’t take her home until she got a new heart.”
But the Mountzes also gained confidence watching the hospital’s transplant team in action, seeing how particular they were about the heart Hannah would receive.
“That was our ‘dry run,’” Tim Mountz said.
At last, a hug
A couple more weeks passed. Hannah remained in intensive care. Her condition continued to decline. Doctors began to consider implanting a device that would help her heart pump more blood.
“I don’t think we were going to wait many more weeks,” Barnes said.
Meanwhile, the Mountzes’ oldest child, Ryan, was about to graduate from Air Force boot camp in San Antonio. The occasion called out for family to be there, but Tim Mountz felt uncomfortable leaving Hannah’s side.
“I told him, ‘You need to be there (in San Antonio) for him,’” Renita Mountz said.
Tim Mountz, David and grandparents flew to Texas for Ryan’s graduation.
On the morning of Feb. 12, the transplant team made a 9 a.m. visit to Hannah’s room.
“‘We usually don’t come in this early, but we’ve got some news,’” Hannah remembered them saying. Another heart was going to be available.
This was the day of Ryan’s graduation. Not to steal his thunder, Hannah and her mother decided to wait until after the ceremony to call Tim Mountz. He immediately booked a flight home.
The surgery started about midnight and continued through the morning hours.
The flight from Texas ran late. Tim Mountz didn’t get to Hannah’s bedside until about 6 p.m.
“It was not disappointing,” he said. After seeing his son graduate, “it was icing on the cake.”
Hannah won’t be able to return to school for three more months. The heavy doses of drugs she’s taking now to keep her body from rejecting her new heart make her much too susceptible to infection. Organ rejection and infection will always be a concern.
“Hannah is aware of that,” Barnes said. But she expected Hannah to be an “amazingly successful” transplant recipient.
Hannah returned home Tuesday. Her family wanted to make it a surprise for David when he came home from school.
“I came to the door, and she kind of poked her head out and threw a ball at me,” he said.
“I was trying to make a basket,” Hannah claimed. There’s a small basketball hoop by the front door in the living room. “I missed. He just stood there like he was in shock.
“‘Do I get a hug?’” she asked.
To reach Alan Bavley, call 816-234-4858 or send email to firstname.lastname@example.org.