Kansas City,
19
February
2020
|
15:46 PM
Europe/Amsterdam

Hannah: 5 Year Anniversary - Heart Transplant

This month marks the 5-year anniversary of the first heart transplant performed at Children’s Mercy. Hannah Mountz, the very first patient, is now a healthy, active college student with her future ahead of her.

“We kind of consider Hannah to be when the program really started,” said Aliessa Barnes, MD, Medical Director of Pediatric Heart Failure and Transplantation at Children’s Mercy.

Hannah was 13 when she was diagnosed with cardiomyopathy, a disease that causes weakening of the heart. She was treated with medication for the first two years, but by age 15, she began having arrythmias, or disruptions to her heart rhythm. Her conditioning was worsening.

At that point, she was transferred from Children’s Mercy Northland to Children’s Mercy Hospital and introduced to a new cardiologist. “Her lab coat had ‘heart failure and transplant’ written on it,” Mountz recalls, remembering the first time she knew that she would need a new heart. Hannah and her family always knew that a heart transplant was a possibility, but it was still a shock. “We went down that road a little quicker than we thought we would,” she said.

The cardiologist in the lab coat was Dr. Barnes. It was 2014 and she had come to Children’s Mercy earlier that year to start the heart transplant program. That December, Hannah became the program’s second patient listed for a transplant.

In the meantime, Hannah had an internal defibrillator put in. At the end of January, the defibrillator did its job. She was shocked and rushed to the hospital. “She was going to have to stay in the hospital at that point,” Barnes said. “We couldn’t take the risk. She was staying with us.”

Hannah didn’t have to wait long. A heart became available and the transplant team prepared for her surgery. On Feb. 13, 2015, the entire team was there ready to give Hannah her new heart.

“Everyone was there, all cheering for her,” said Barnes, who was in the operating room as they went to start Hannah’s new heart for the first time. “I’m pretty sure mine wasn’t beating until I saw hers beating. It was a very intense moment.”

That moment began a new chapter for Hannah as well the heart transplant team.

“After that first one, I think everyone saw the teamwork and the excitement of starting a new chapter for these kids. With a new heart beating you see a new life and new possibilities in front of them and it’s just miraculous,” Barnes said.

In the five years since that moment, they have performed another 24 successful heart transplant surgeries and have been designated as a Center of Excellence by the Centers for Medicare and Medicaid Services (CMS).

Hannah graduated high school and moved away for college, where she is pursuing a degree in music education.

“I’m definitely doing really well,” said Mountz, although as a heart transplant recipient, her compromised immune system can be challenging in a college setting.

“There’s a lot of judgement calls you have to make,” she said about everyday health choices like washing hands frequently and keeping a safe distance from sick roommates and classmates. When she does get sick, it tends to last longer and is more severe than other people. “There’s been a few years where I’ll get a 24-hour bug for four days,” she said. “It hits me harder, hits me longer, but I just kind of know if I do have a concern I’ll email my team.”

That multidisciplinary team of nurses, surgeons, psychologists, pharmacists, social workers, nutritionists, infectious disease experts and more keep patients like Hannah strong and healthy before, during and after transplant.

They are also the ones patients and families reach out to when they have questions or concerns. “When they call at night, they are talking to a nurse that they see in clinic all the time,” said Barnes. “It’s us, we know her. We become a true family,” which, she added, makes it bittersweet when a patient transitions to an adult hospital. “You want them to grow and spread their wings, but we miss them.”

Hannah will transition at the end of this year. “It’s a little sad to think that I’m leaving Children’s,” Mountz said. But she feels that she’s ready now, thanks to her team. “They’ve played a huge role in my life and that will never change. But you know, I’m going into my adult life and it’s important to eventually move on to an adult hospital.”

Beginning in their early teens, transplant patients begin a staged approach to prepare them for the eventual transition to adult care. “We help them gradually over their teenage years gain more and more autonomy and control over their own health,” Barnes said.

The goal is to give these special patients the confidence to not only transition, but to pursue whatever they want to do in life, without feeling tethered. “We don’t do this and want to keep you in a bubble,” Barnes said. “We do this so that you can live life.”

Hannah is doing just that. She’s pursuing her passion of music and has been an advocate for organ transplant and heart disease. She’s looking forward to graduating college and beginning her career.

“That’s why I’m doing music,” Mountz said. “I want to be a teacher and inspire kids. I don’t want to ignore that it happened. I think everything happens for a reason and I think it’s pretty cool that I’ve been able to get this far.”

Each year, the heart transplant team hosts a picnic for patients and families. “We ask, if they are willing, for our graduates to come back to that picnic,” Barnes said. Seeing former patients who have thrived like Hannah is a highlight for the heart transplant team, but also families who are going through what Hannah and her family did five years ago. “It gives them a lot of hope and excitement,” said Barnes, who hopes that Hannah will be among those graduates at the next picnic.

 

Learn more about the Ward Family Heart Center at Children's Mercy