Stanford Medicine Children’s Health achieves rare milestone in pediatric heart transplantation
Tiffany Collins never would have guessed that her healthy, active 14-year-old daughter, Mackenzie, would be the 500th heart transplant patient at Stanford Medicine Children’s Health.
“I was in total shock. We have no history of heart disease in our family,” says Tiffany. “One minute I had a perfectly healthy child, and the next I’m talking with doctors about a heart transplant.”
In February 2021, Mackenzie, who loves bike riding, swimming, and playing sports, became deathly ill. First, she lost her appetite and energy. Then, she started vomiting and having trouble breathing. Her hometown pediatrician suspected that she had a virus and tested her for COVID-19, but it came back negative. Yet, Mackenzie didn’t get better. She got worse.
“Her feet started swelling, and soon after, the swelling moved into her legs and abdomen. We rushed her to our local hospital’s emergency department,” Tiffany says. “Within an hour, doctors diagnosed her with congestive heart failure, and within the next hour she was in an ambulance headed to Lucile Packard Children’s Hospital Stanford.”
Mackenzie was diagnosed with dilated cardiomyopathy by cardiologists at the Betty Irene Moore Children’s Heart Center at Stanford Medicine Children’s Health, a progressive form of heart disease that causes the heart muscle to enlarge and stretch—or dilate. When this happens, the heart becomes weak and is unable to pump blood sufficiently to the lungs and body. Dilated cardiomyopathy is caused by viral infections, genes, or toxins. In Mackenzie’s case, genetic testing at Stanford Medicine Children’s Health confirmed that she had a mutated heart muscle gene.
“While it sounds strange that Mackenzie and her family were unaware of her heart failure, this is fairly common for teenagers with dilated cardiomyopathy,” says David Rosenthal, MD, director of the Pediatric Advanced Cardiac Therapies (PACT) program at Stanford Medicine Children’s Health. “Mackenzie’s heart failure was already severe, so she was admitted into our PACT program.”
Multiple heart experts collaborating for Mackenzie
Stanford Medicine Children’s Health’s PACT program is innovative among major pediatric heart centers in that it combines care for heart failure and heart transplant patients under one roof. When heart failure and heart transplant doctors work together, and collaborate closely with cardiothoracic surgeons and cardiovascular intensive care specialists, patients fare better because they receive the right care, in the right place, at precisely the right time.
The Pediatric Transplant Center team, the PACT program team, and the broader Betty Irene Moore Children’s Heart Center team, along with support teams like Social Services, physical therapists, and Child Life, encompassed Mackenzie’s health as a whole. “It wasn’t just, ‘Oh, your child has a heart problem, let’s focus on that.’ It was everything. Every aspect of her health and well-being. It’s not something I think you find in many places, and it really makes a difference,” Tiffany says.
The PACT program exists within the hospital’s leading Betty Irene Moore Children’s Heart Center, which is known for welcoming the toughest, most highly complex heart cases from across the nation and achieving excellent outcomes, including one-year survival rates over 94% for heart transplantation. The Moore Children’s Heart Center is one of just a handful of pediatric heart centers across the nation to reach the impressive milestone of 500 heart transplants.
“We are one of the largest-volume programs, both in pediatric heart transplant and ventricular assist devices (VAD), in the country,” says Elizabeth Profita, MD, pediatric cardiologist. “Because we deal with such complex cases on a regular basis, and we care for such a large number of patients, what’s considered rare at other children’s hospitals is more routine here.”
At first, doctors tried intravenous medicines to strengthen Mackenzie’s heart and control rhythm problems. Yet her heart continued to weaken, and she was placed on the heart transplant list—starting her on the road to becoming the hospital’s 500th heart transplant recipient.
“I was very surprised to hear that I was the 500th heart transplant at Stanford Medicine Children’s Health. I am glad and very proud that it was me,” says Mackenzie.
To get her to transplant feeling strong, she needed an artificial heart pump known as a left ventricle assist device (LVAD) to support her failing heart while she awaited transplant. Michael Ma, MD, cardiovascular surgeon, performed the open-heart surgery to place a next-generation device called the HeartMate 3™.
Ventricular assist devices (VADs) are a bridge to transplant, empowering blood to flow and encouraging the body to recover. The Moore Children’s Heart Center’s PACT program is a leader in VAD volumes and successful outcomes, having placed more than 200 to date, even in babies as young as 15 days old.
“At the Moore Children’s Heart Center, we are all unified by the same mission—delivering the best possible care for every patient. Every day we wake up and think about how we can collaborate to help children and their families,” says Dr. Ma.
Finding the perfect donor heart
With her new heart pump, Mackenzie was able to leave the hospital and return home to await her transplant. She felt fine, despite having limitations like needing to forgo her favorite activity—swimming. Luckily, she didn’t have to wait long, because a matching donor heart was located just a few months later, in June.
“We received the call that they had the perfect heart in the middle of the night, on a Thursday. Envisioning your daughter’s heart being removed is terrifying,” Tiffany says. “But Mackenzie was really excited. If she could’ve done cartwheels with all of her VAD cords, she would have.”
The six-hour open-heart surgery performed by Dr. Ma went extremely well. Within a day, Mackenzie was up out of bed and walking the halls with a physical therapist.
“When we arrived at Lucile Packard Children’s Hospital Stanford for the transplant surgery, we were told she was the third one that week, and I thought that was amazing, so when I heard she was the 500th heart transplant, I was even more amazed,” Tiffany says. “For her to be such a success as the 500th heart transplant is so wonderful!”
Within 14 days, Mackenzie was discharged from the hospital and able to join her family at the Ronald McDonald House at Stanford to complete her recovery. The VAD had done its job of getting her strong going into transplant, so she was strong coming out—and her resilient spirit did the rest.
“With heart failure, there are always ups and downs, but each time Mackenzie had a setback, she reset herself, rolled with it, and ultimately was able to rebound and recommit to moving forward,” Dr. Rosenthal says.
“Today, you would never know this child had two open-heart surgeries in a six-month timeframe. She is back to her beloved swimming, hiking, and taking daily walks,” Tiffany says. “Her energy level is pretty much 100%.”
Tiffany gives three words to describe the care she received at Stanford Medicine Children’s Health, starting with compassionate. The next word is informative, because she was kept in the loop with every decision.
“For the last word, I’d have to say intelligent. I was blown away by the quality of care that we received and how they answered all of our questions,” Tiffany adds. “I had complete trust and confidence in their care.”
A legacy of heart transplants
Stanford Medicine Children’s Health performed the first successful pediatric heart transplant over 35 years ago. From that first triumph, the hospital built a legacy as one of the highest-volume heart transplant programs in the United States, holding the No. 1 spot for the highest pediatric heart transplant volumes in the West. Coupled with the Pediatric Transplant Center, which is No. 3 nationwide in organ transplant volumes, this team of top pediatric heart specialists performs approximately 25 heart transplants each year. The more transplants a hospital undertakes, the more expert doctors and highly complex cases it attracts, which ultimately leads to unrivaled care and consistently exceptional outcomes. Our heart doctors act boldly, never shying away from the most complex heart failure patients—even those who have been turned away from other centers—because they want every child to have his or her best chance at surviving and thriving.
“By celebrating the 500th pediatric heart transplant, we celebrate Mackenzie and the hundreds of children whose lives have been improved by heart transplantation and organ donation,” Dr. Profita says.
While Mackenzie feels honored to be a part of the hoopla to celebrate the 500th, she’s more excited to simply be a teen and do what she loves, like reveling in her freshman year of high school, getting back in the water for a swim, and riding her bike to meet friends.
“I’m very grateful to everyone at Stanford for taking such amazing care of me. There’s a lot I am looking forward to in my life, and I’m so glad that I can do what I want,” Mackenzie says.
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