Born with a rare congenital heart disease, Katherine Schroeder-Herrmann underwent more than 20 heart procedures before her 22nd birthday. She says the hospital was her second home growing up and recalls befriending the healthcare workers who took care of her.
“Before my heart transplant, I never knew what it was like to have a healthy heart. I knew a life of hospitals with different doctors and nurses,” says Katherine.
Shortly after birth, Katherine’s family learned she had Shone's Complex, which is diagnosed when babies have at least three defects that impact blood flow in the left side of their heart. It accounts for less than 1% of all congenital heart diseases. Due to her condition, Katherine had her first open-heart surgery at just 1 month old. She had a pacemaker installed shortly after.
A few weeks after Katherine was born, her family found out she had Shone's Complex. She underwent her first heart procedure a short time later. (Courtesy: Katherine Herrmann)
“For the first few years of my life, it was continual surgeries to get my heart to a good place,” says Katherine. “After that, the doctors focused more on maintenance.”
Throughout her childhood, Katherine got used to daily medications and frequent visits to the doctor. She remained in school even though it was hard to keep her energy up. Katherine and her family were determined to keep an everyday routine outside of the hospital.
“My parents did a great job of making sure I had a childhood like everyone else,” says Katherine. “They didn’t want me to focus on the negative.”
In 2014, Katherine transitioned her care from Akron Children’s Hospital (an affiliated program with Cleveland Clinic) to the Pediatric and Adult Congenital Heart Center at Cleveland Clinic. This program brings together pediatric cardiovascular and adult congenital heart physicians from both healthcare systems to collaborate on patient care. Her care team at Cleveland Clinic included Gerard Boyle, MD, Cleveland Clinic Children’s pediatric cardiologist, and Eileen Hsich, MD, cardiologist.
Katherine with her cardiologist, Dr. Eileen Hsich, who worked closely with her to determine when it was time to move forward with a heart transplant. (Courtesy: Cleveland Clinic)
Although years of maintenance surgeries had been keeping her condition at bay, Katherine was ultimately diagnosed with heart failure at 18 years old. She found out while getting her pacemaker replaced at Cleveland Clinic, shortly after she started college.
“I came in for the procedure during my college winter break because I thought it would be a routine thing. But I ended up finding out I was in heart failure and a transplant was my next option,” says Katherine.
Dr. Hsich worked closely with Katherine to determine the best time to move forward with a heart transplant. They didn’t want to begin the process too early when she was still able to maintain her health. They also didn’t want to start it too late when she was severely sick. Another obstacle was Katherine’s transplant procedure would be high-risk because the blood vessels in her legs faced wear and tear over the course of her childhood surgeries.
Katherine graduated college with her bachelor's degree while she was in heart failure, waiting for a heart transplant. (Courtesy: Katherine Herrmann)
“During open-heart surgery, we look for blood vessels to put catheters in to help keep blood circulating,” says Dr. Hsich. “We usually go to the largest vessels in the groin area, but she didn’t have them. Both of her legs had blockages that prevented proper blood flow.”
Dr. Hsich advocated for Katherine’s case, and she was put on the transplant waiting list in June 2021. Around this time, she was still in college and recently engaged. Katherine didn’t let her congenital heart disease hold her back, but she did begin to notice signs her condition was worsening.
“I started having memory issues due to the lack of blood flow to my brain. I also struggled with shortness of breath and keeping my energy and appetite up,” says Katherine. “I went through my senior year of college hoping and praying I would get a call a heart was available. I was exhausted physically and mentally.”
Katherine with Drs. Hani Najm and Hsich, who worked with a team of specialists to treat Katherine’s congenital heart disease. (Courtesy: Cleveland Clinic)
More than one year later, Katherine got the news. She underwent a heart transplant in July 2022, at 21 years old, marking her fifth open-heart surgery. Because of the complexity of her case, her transplant team included pediatric and congenital heart surgeon Hani Najm, MD, cardiothoracic surgeon Michael Zhen-Yu Tong, MD, as well as vascular surgeons Sean Lyden, MD, and Lee Kirksey, MD.
“I had the A-team that day. Even though I had a lot of restrictions on when I could get a heart because I was high-risk, everyone who needed to be there that day was and made sure I had a successful surgery,” says Katherine.
Dr. Hsich says, “The surgeons who came up with the idea to make this transplant possible were available when the organ came. I couldn’t have asked for a better result. Katherine did incredibly well.”
Katherine was able to marry her college sweetheart, Ian, after her heart transplant procedure. (Courtesy: Devin Hill)
Since undergoing a successful heart transplant, Katherine feels more energetic and can do things she could never do before. After struggling to walk for just a few minutes without getting winded, she completed a 5K. Prior to her heart transplant, it was difficult for Katherine to maintain a job. Now she’s working as an emergency dispatcher while continuing to go to college for her master’s degree. However, she considers getting married one of her biggest milestones since her transplant.
“I was able to marry my college sweetheart. It’s something I never thought I would live to see,” says Katherine. “I’m beyond grateful for the many new things I've been able to experience since my transplant.”
Katherine was able to meet the family of her heart donor Desiree, including Desiree's father Darrell Conner. (Courtesy: Cleveland Clinic)
Following her transplant, Katherine was also determined to learn more about her donor. After she expressed interest to her transplant coordinator, she wrote a letter to her donor’s family. The family responded saying they were open to meeting Katherine. Cleveland Clinic worked with the Center for Organ Recovery and Education (CORE) to coordinate the gathering. Katherine learned her deceased donor was Desiree Burge, who ended up saving five lives by becoming an organ donor.
“I wanted to learn about my donor because I want to make sure I’m using this heart for a good purpose. It was emotional and overwhelming to hear about the person who’s gotten me this far,” says Katherine. “Desiree was feisty and funny – things I clearly am myself. It's a perfect match in a lot of ways, and it was a blessing to be able to meet her family.”
After meeting, Katherine and Desiree's family both say they plan to keep in touch. (Courtesy: Cleveland Clinic)
“Desiree's heart lives on, and so does she,” says Darrell Conner, Desiree's father. “Even though she's no longer with us on Earth, her decision to be an organ donor means she's still here in a way. She's healing both the recipients of her final gifts, and also us, her own family. We know she made a difference, and we find comfort and pride in that.”
Katherine, who now has her sights set on finishing college to work as a clinical mental health counselor, will continue following up with Dr. Hsich to ensure there aren’t any signs of heart transplant rejection.
Katherine marked the one-year anniversary of her heart transplant procedure with what she called a "heartiversary" celebration. (Courtesy: Katherine Herrmann)
“Throughout this entire process, Katherine has been determined and focused. She’s been doing great and enjoying life since her transplant,” says Dr. Hsich.
Katherine adds, “Transplant has been huge for me because I never had a healthy heart. Some people are given second chances with a transplant, but I feel like this has actually given me a new life because I had been sick ever since I was a kid."
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Heart, Vascular & Thoracic Institute (Miller Family),
Cleveland Clinic Children's