New Heart Leads to Dreams of Becoming a Doctor

Dedicated care team and timing give a 6-year-old a second chance at life

Mikayla Huynh, 6, loves to draw, bike, scooter, and play piano, working hard to learn new songs. Her favorite thing to do is sing at the top of her lungs, something that was not possible a couple of years ago.

“Mikayla was 4 when she started having symptoms,” says Stephanie Yuan, Mikayla’s mother. “She was short of breath, but we had no idea that was because her heart was sick.”

Stephanie took Mikayla to her pediatrician for a PCR test after a COVID-19 exposure in preschool. During that appointment, the doctor happened to detect a heart murmur. He wasn’t overly concerned, but referred them to Nikola Tede, MD, at Stanford Medicine Children’s Health in San Francisco, just in case.

“My husband and Mikayla went to the doctor’s appointment,” Stephanie says. “That’s when I got a FaceTime call. The cardiologist was next to my husband, Mike, and she said, ‘I have some very difficult news to deliver. Your daughter has restrictive cardiomyopathy, and eventually she’ll need a heart transplant to survive.’ My mind just went blank.”

A race against the clock

Restrictive cardiomyopathy is a condition where the heart muscle becomes stiff, preventing the heart from pumping enough blood to the body. It is the rarest form of cardiomyopathy seen in children, accounting for up to 5% of pediatric cardiomyopathy cases. The only chance for patients is a heart transplant.

Mikayla was immediately referred to Lucile Packard Children’s Hospital Stanford, where she met Chiu-Yu Chen, MD, pediatric cardiologist with the Pediatric Advanced Cardiac Therapies (PACT) program. As part of the program, children in need of heart transplant receive seamless care from the time of heart failure diagnosis through the waiting for a suitable donor and after heart transplantation.

“The thing that was very concerning to me was how rapidly her symptoms seemed to be progressing,” Dr. Chen says. “It was clear she needed expedited evaluation and management, so we admitted her to the Cardiovascular Intensive Care Unit that day.”

If left untreated, restrictive cardiomyopathy can lead to arrhythmias causing sudden death or high blood pressure in the lungs.

“It becomes a race against the clock because by the time you develop high blood pressures in the lungs, you may not be a heart transplant candidate because the new heart can’t cope with those high pressures and may even be irreversible at that point,” Dr. Chen says.

Because there was no way to know how long Mikayla would need to wait for a transplant, the team performed a surgery to connect her to a Berlin Heart, which is a ventricular assist device that helps circulate blood throughout the patient’s body. The Berlin is a machine on wheels and follows the patient wherever they go. Mikayla called it “Mr. Berlin,” and despite her being limited in where she could go, the family found ways to cope.

“We started to have some fun in the hospital with her child life therapist and started to make friends with other heart families on the floor. Her nurses, her care team, they all have just been so amazing to her. We are so grateful to Stanford Children’s,” Stephanie says.

On June 9, 2023, three months after they were admitted, Stephanie got a call from her husband, who was at the hospital with Mikayla.

“He goes, ‘There’s a heart available for her.’ Immediately, I was in tears. He told her Mr. Berlin was coming out, and Mikayla was crying she was so happy,” Stephanie recalls.

Two days later, Mikayla came out of surgery with a new heart beating strongly in her chest.

‘I want to be a doctor’

Every milestone means so much more to the family.

“Whether it’s a big or small achievement, I’m always emotional. There are no words to explain how proud we are of her, and she’s our inspiration,” Stephanie says. “Even seeing her be able to scooter or bike, I’m just in awe and super-grateful that she’s still here.”

The pediatric heart transplant waiting list mortality is around 13% in the United States. The waiting period varies from days to months to years and can be longer, the smaller the child is.

“I would say three months is on the shorter side for what we see for a child of Mikayla’s size,” says Michael Ma, MD, division chief of Pediatric Cardiac Surgery and surgical director of the PACT program. “There is a huge need here for awareness from all communities to encourage organ donation because it’s a scarce resource. And it’s lifesaving for kids like Mikayla.”

After recovering from surgery, Mikayla went back to school, and then last summer, the family went on a trip to Hawaii. It was her first time on a plane.

“The gift of transplant allows our patients the opportunity to do things they otherwise may not have been able to enjoy,” says Donna Lee, CPNP, pediatric nurse practitioner. “I see it as a partnership. We provide medical guidance, but in the end, it’s the family learning to live a new normal. So, seeing her thriving is such a reward.”

Mikayla and her family are now raising awareness of the importance of donation in their own community.

“I did a poll on our Instagram page, and my takeaway was that most people who are following our journey don’t realize what organ donation truly means,” Stephanie says. “So, we try really hard to tell people, ‘What if you knew you could save up to eight people’s lives with donation?’”

The impact of donation can be seen clearly in Mikayla. At her preschool graduation last year, every child in her class was asked, “What do you want to be when you grow up?” Without hesitation, Mikayla said, “I want to be a doctor.”

The team at Stanford Children’s has been performing heart transplants for more than 50 years, now performing more than 20 transplants each year. Learn more about our Heart Transplant services >