Heart Teams Move Mountains to Get Kenson Home to Hawai‘i

Critical care, heart surgery, heart failure, and heart transplant experts act quickly to save boy’s life

After spending over two years of his life in the hospital, Kenson Saunders is finally home doing what he loves best: being in nature. The 5-year-old beat all odds, over and over again, to make it back to Hilo, Hawai‘i, to enjoy his family, his garden, and his favorite thing, palm trees.

“He surprised us all—his parents, his family, and his doctors. We didn’t think he would ever come home,” says his mom, CJ. “Walking through the door was an indescribable feeling of gratitude and joy.”

Born with a heart on the wrong side of his chest

Kenson was born at Kapi‘olani Medical Center for Women & Children in Honolulu, a partner hospital of Stanford Medicine Children’s Health. There, heart doctors discovered Kenson had a rare, congenital heart condition called heterotaxy syndrome of the heart.

Heterotaxy means “different arrangement” of organs. For Kensen, it meant that his heart grew in the right side of his chest rather than the left during fetal development. This reversed heart placement is called dextrocardia.

At 4 days old, Kenson was flown to Lucile Packard Children’s Hospital Stanford, which specializes in treating rare and complex congenital heart defects. “We were at the Betty Irene Moore Children’s Heart Center for six weeks, where he received his first round of heart surgeries,” CJ says.

The family was sent home knowing that the day would come when Kenson would need more heart surgeries or a heart transplant. That day came a little over two years later, and the hospital stay was much longer than anyone had ever imagined.

A ventricular assist device and a heart transplant

When Kenson was 2 1/2 years old, the Hawai‘ian family returned to Packard Children’s for what they thought would be elective heart surgery. It turned out to be much, much more.

“We ran an echocardiogram and we found severe biventricular dysfunction (problems with both sides of his heart) and advanced heart failure. The team ran to find me, and after seeing the results, I immediately admitted him to cardiovascular intensive care for critical care,” says Elizabeth Profita, MD, pediatric cardiologist at Stanford Children’s.

Several heart teams came together quickly to save Kenson’s life. Heart surgeon and chief of pediatric cardiac surgery Michael Ma, MD, placed a ventricular assist device (VAD), an advanced heart pump, in his chest. Only large heart centers are able to provide VAD support, and Stanford Children’s is a national leader in the use and innovation of VADs in kids.

VADs are often a bridge to transplant, holding kids over until a donor heart can be found. The Pediatric Advanced Cardiac Therapies (PACT) (heart failure/heart transplant) program team at Stanford Children’s evaluated Kenson for VAD placement and transplant. The VAD was helping, but it wasn’t doing enough. He needed a heart transplant and fast. Remarkably, just two days after listing him for a donor heart, the team got the call that a heart had been found.

“Getting a donor offer for a child within two days is crazy fast. It never happens. We knew we had to take it, despite having another complex heart transplant scheduled that evening,” Dr. Profita says. “We moved mountains and brought in a second full transplant team for Kenson.”

Dextrocardia, having a heart on the wrong side of the chest, makes transplant especially challenging because the complex anatomy means blood vessels are misaligned, requiring manipulation of the donor heart to fit and function well.

“At Stanford Children’s, we have pioneered innovative techniques for dextrocardiac transplants. It really speaks to our heart surgery expertise and Dr. Ma’s skills to be able to quickly figure out how to implant the donor heart,” Dr. Profita says.

Needing critical support on ECMO

Despite the transplant going well, Kenson developed a rare, dangerous complication called primary graft dysfunction. It meant that his new heart did not start beating as it should in the first 24 hours.  

“It’s a known complication but a really scary one. In 40% of cases, children do not survive,” Dr. Profita adds.

To help Kenson survive, the team put him on a sophisticated heart-lung bypass machine called extracorporeal membrane oxygen (ECMO). Only the largest pediatric hospitals in the nation have ECMO. It is used as a last resort in the most critical situations.  

Because Kenson was so young and so sick coming in, he battled one rare complication after another. Besides primary graft dysfunction, he also experienced posttransplant lymphoproliferative disorder, a serious complication whereby white blood cells overgrow. It made him terribly sick. He also developed rejection plus a progressive heart block, where the electrical signals in his heart misfired. Again, Kenson needed ECMO to save his life.

“Our hope got clouded because he was so sick. I will never forget hearing the words, ‘We don’t think your child will survive this,’” CJ says. “His dad, Kendall, and I told him, ‘If this is too hard, we are OK if you don’t want to fight anymore.’”

But Kenson did fight. The little warrior held on for a better day. His heart stabilized, but he had more challenges to face.

Over two years of multidisciplinary support to get Kenson home

Heart problems can sometimes create chronic kidney problems, and they did for Kenson. He needed long-term dialysis and specialized kidney care from Pediatric Nephrology. He also needed nutrition support to ensure that he was getting enough nutrients. He was put on total parenteral nutrition (TPN)—intravenous nutrition through a central line in Stanford Children’s Health’s Intestinal Rehabilitation Program.

His survival took the coordination of multiple highly specialized teams all working together for the best outcome—a hallmark of Stanford Children’s care. “We have great partnerships amongst our teams. So many people collaborated to support him and to love this family,” Dr. Profita says.

“We are really grateful for the care he received. He was so complex that he needed many minds to come together to take care of him, and Stanford Children’s did that without question,” CJ says.

She describes the care team of doctors, advanced practice practitioners, nurses, social workers, and even janitors as a family away from home. She says she and Kendall relied on the team to get them through dark times.

“The family’s ability to keep getting back up was outstanding. Not many people can do that. They are incredibly resilient,” Dr. Profita says.

CJ helped to keep the mood light by hosting fun events for other heart families and staff, including races down the halls, Easter egg hunts, tree-drawing contests, and sharing Hawai‘ian treats. She made the care team T-shirts and gave them palm tree charms to thank them for fighting for Kenson.

“A piece of the journey was realizing, ‘Why fight if we are not going to be happy?’ We just wanted Kenson to be happy. He fought so hard to live,” CJ says.

Kenson was discharged after two years, and the family lived another half year near the hospital at the Ronald McDonald House Charities Bay Area. During this time, CJ and Kendall did everything they could to live fully and make memories with their first and only child. They took train rides across California, visited national parks, enjoyed the Santa Cruz boardwalk, and went to Lake Tahoe so Kenson could experience snow.

Home loving life and enjoying nature

Kenson has been home in Hilo, Hawai‘i, for a little over a month. He is reveling in what he loves the most: spending time in the family garden and walking through the trees—banana, mountain apple, and palms.

“He can name all of the palm trees, and he is adamant that we get a foxtail palm,” CJ says.

Remarkably, Kenson remembered everything from the second he arrived home, even though he was just 2 years old when he left. He knew where his room was, which plants were in the garden, and how to walk to his grandparents’ house. Despite all the lifesaving care he received for his heart, his brain remained strong—partly thanks to the extra-advanced measures his heart team took to protect his brain during critical care times.

“We didn’t tell our extended family and community that Kenson was coming home, so it was a big, joyful surprise,” CJ adds.

Kenson’s heart is working fairly well, but he still has some heart and other health issues. He may need more heart surgeries in the future. It’s something CJ and Kendall have accepted. It motivates them to live without regret, enjoying each moment with Kenson and living each day to the fullest.

Soon, Kenson will travel to Kapi‘olani Medical Center—a valued Stanford Children’s partner in Hawai‘i—for follow-up heart care, saving the family a plane ride to California. The Stanford Children’s Pediatric Advanced Cardiac Therapies (PACT) (heart failure/heart transplant) team travels to Kapi‘olani three to four times a year to provide heart failure and transplant care to patients.

“There was a pivotal moment in the hospital where I gave up the struggle of trying to get his health perfect,” CJ says. “I realized it never will be perfect, and making the most of his life and focusing on the quality of his life was what we needed to do.”

For starters, the family plans to visit every national park and build a bigger garden for Kenson.

“Getting him home was a huge milestone. I wouldn’t doubt there’s a chance he could get better just from being at home,” Dr. Profita says. “I hold out hope for that.”

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