मिकायला, 7, सैन फ्रांसिस्को

Seven-year-old Mikayla’s journey took a life-altering turn about three years ago. Her mom, Stephanie, recalls that for the first four years, Mikayla appeared healthy, with no signs of heart problems. But during a routine COVID test at age 4, Mikayla’s pediatrician detected a heart murmur. The doctor wasn’t overly concerned but referred them to a cardiologist at Stanford Medicine Children’s Health for further evaluation. 

“I didn’t think it was a big deal, since her doctor reassured me that many people are born with murmurs,” Stephanie recalls. “I even went to work that day, and my husband, Mike, took her to the doctor. And then suddenly, I got a FaceTime call, and it was the cardiologist. She told me that Mikayla had restrictive cardiomyopathy. My daughter would eventually need a heart transplant to survive. I was immediately in tears.” 

Restrictive cardiomyopathy is a rare condition that causes the heart muscles to stiffen and restrict blood flow. Mikayla’s heart condition was a result of a genetic mutation, linked to the MYH7 gene. Symptoms, such as shortness of breath and fatigue, which the family had noticed but hadn’t connected, now made sense. 

Mikayla was admitted to Lucile Packard Children’s Hospital Stanford, where doctors confirmed her diagnosis and immediately began to take action. The team connected her to a Berlin Heart, a mechanical device that helps circulate blood when the heart is too weak. Though it gave Mikayla a lifeline, it also confined her to the hospital with limited mobility, which was tough for a young child. 

“Restrictive cardiomyopathy is a one-in-a-million condition,” Stephanie says. “It is the rarest type of cardiomyopathy, but we’ve already met two other children who also have it and have come to Packard Children’s.” 

At Stanford’s Betty Irene Moore Children’s Heart Center, a leader in pediatric heart transplants, Mikayla received specialized care from a team renowned for its outcomes. As part of the Pediatric Advanced Cardiac Therapies (PACT) program, Mikayla’s care was seamless, covering all aspects of her treatment, from diagnosis to her transplant and recovery. 

One key part of Mikayla’s emotional support came from Christine Tao, a child life specialist. Christine used play, distraction techniques, and art therapy to help Mikayla cope with medical procedures. Mikayla quickly bonded with Christine, who played a pivotal role during difficult moments, including when Mikayla had to undergo surgery and procedures. 

“When Mikayla had to go into a procedure, we couldn’t go back into the surgery center with her, but Christine could,” Stephanie recalls. “I realized then just how important Christine is—she goes where we can’t and provides Mikayla with support and distraction, so she isn’t scared.” 

Stephanie was so grateful for Christine that she nominated her to be a Hospital Hero.

On June 9, 2023, after months of waiting, the family received a call that a heart was available. Two days later, Mikayla underwent her heart transplant, and her recovery was remarkable. Just one week after the surgery, she was out of the intensive care unit and back home by mid-July. 

All told, after various obstacles, a hemorrhagic stroke, and two open-heart surgeries, including her transplant, Mikayla spent 111 days at Packard Children’s Hospital. She continues to see the team for monitoring to ensure her new heart beats beautifully inside of her with minimal complications. 

“It’s just wonderful to see how well Mikayla is doing,” says Seth Hollander, MD, medical director of the Heart Transplant Program. “Although she will need to take medications to prevent rejection and see our specialized cardiologists for the rest of her life, she can expect to live her life with relatively few restrictions. She can go to school, play, travel, and enjoy time with her friends and family.” 

This year, Mikayla will be honored as a Summer Scamper Patient Hero at the 5k, kids’ fun run, and Family Festival पर Saturday, June 21, recognizing her courage and strength throughout her journey. 

Today, Mikayla, who is now in first grade, enjoys riding her scooter and bike, singing, dancing, and crafting. Recently, Stephanie and Mike took Mikayla on vacation for the first time since her diagnosis, and it was a joyous occasion. 

“I don’t know what we would have done without all the care and support we received from the Stanford team,” Stephanie says. “They are all amazing. I really don’t know what would have happened without them, and not just Mikayla’s care—they got us through the emotional challenges, too.” 

With a new heart and an optimistic future, Mikayla has dreams that are bigger than ever. When asked what she wants to be when she grows up, Mikayla doesn’t hesitate: “I want to be a doctor at Stanford!” 

Thanks to the lifesaving care at Lucile Packard Children’s Hospital, Mikayla is thriving, and her future is wide open.