Life Before and After Organ Transplant

April is National Donate Life Month; families share the challenges and victories of awaiting a lifesaving organ donation and life after transplant.

“Victory day!” was the last thing Isaac Guajardo’s family heard him say as he was wheeled into surgery. Just 9 years old, Isaac was having his fifth heart surgery in less than three years. But he knew this one was different—he’d be getting a whole new heart.

Isaac, now ten years old, was born with Marfan syndrome, a connective tissue disorder that is associated with cardiovascular risks. At age 6, he began a series of heart surgeries in 2016 at Lucile Packard Children’s Hospital Stanford. Still, his condition grew precarious. Without a heart transplant, doctors did not believe Isaac would survive, and he was placed on the transplant list.

On average, Packard Children’s performs 15 to 20 heart transplants each year. Although some patients are too sick to go home while they wait—especially if they live far from the hospital—others, like Isaac, get lucky; he was able to wait at home in Tulare, California. In cases like his, the transplant team of clinicians, social workers and patient care coordinators work together to determine a child’s clinical needs and then develop a care plan that allows the child to return home.

Transplant outcomes depend largely on the patient’s health at the time of surgery; and the team communicates with the family, the child’s school and local care providers to help patients stay as robust as possible until an organ is available.

With this support from his transplant team, Isaac attended school for the first half of third grade, wearing a feeding tube and milrinone drip—a medicine used to support blood pressure in patients with heart failure. He even held an info session for his teachers at the beginning of the school year in which he explained the tubes attached to him and what it meant to be on the heart transplant list. “He told them that it wasn’t scary, and that it was OK to have questions if they wanted to ask him anything,” says his mother, Samantha.

Two days after his ninth birthday, Isaac felt chest pains and was life-flighted to Packard Children’s. Doctors made the decision to keep him in the hospital until a heart became available. Four weeks later, the call came: There was a match.

At any one time, Packard Children’s has about 50 to 70 children actively waiting for donor organ.

The transplant team does everything possible to shorten waits for children: putting them on organ lists as soon as possible and, when appropriate, quickly identifying potential live donors and working to maximize the likelihood of a good match.

A shorter wait time, of course, can make a world of difference. So can feeling supported throughout the tumultuous transplant process. Ten years ago, Packard Children’s began helping families with emotional and practical support in a new way. In 1999, the Parent Mentor program was established; in this program, experienced parents offer care-management strategies, as well as a shoulder to cryon, to parents of newly diagnosed youngsters. Mentor families may offer tips on planning ways to manage the rigorous schedule of anti-rejection drugs and practical advice on keeping a child safe from marauding pathogens, which can easily defeat transplant patients.

Therapeutic relationships in the hospital

Many children spend a significant amount of time away from home while waiting for a donor organ.

In an effort to preserve as much of a sense of normalcy for them as possible, Packard Children’s provides educational, social and emotional support from social workers and from child life and creative arts specialists, to name a few.

For 15-year-old Kayano Lizardo-Bristow, creative arts therapy in particular made a huge difference during his 10-month wait for a kidney transplant. Kayano’s chronic kidney disease forced him and his mom to relocate to Palo Alto last summer for regular dialysis treatment, leaving behind his father, younger brother and grandfather in Yuba City. He and his mother, April Bristow lived at the Ronald McDonald House at Stanford while Kayano received dialysis three times a week, for nearly four hours at a stretch.

“It’s tough on a 15-year-old boy to be so limited in extracurricular activities, visits with others and access to fun things,” says Bristow. “We had been feeling extra homesick, more than ever.”

While in the hospital, Kayano looked forward to his guitar sessions with Rebekah Martin, music therapist. As part of the hospital’s Music Therapy program, Martin’s work with Kayano helped offer him a sense of control over his environment. “Interwoven between learning cool riffs and strumming patterns are things like social skills, opportunities for independence and choice making, or conversations about support systems and meaningful relationships,” says Martin.

Control often felt fleeting to Kayano; three times in the past months awaiting transplant it appeared that he could be getting his new kidney, but the organs proved unsuitable. The care team tries to set families’ expectations at the start, telling them, “It isn’t over until it’s over,” says Joshua Gossett, DNP, MBA, RN, FACHE, administrative director, Pediatric Transplant Center. “We want the patient to have the exact right kidney for them. Sometimes we find out after we call families in that the kidney isn’t the right fit.” When the waiting gets tough, transplant coordinators connect families with programs like Music Therapy, parent mentors and psychologists to offer support.

Martin believes that music therapy has played a part in helping Kayano keep a positive outlook. Like many patients with kidney failure, Kayano is easily fatigued, but he’s able to keep his eyes on the prize and says that he’s looking forward to “being more energetic, so I can hang out with my cousins.”

This April, Kayano’s long wait at last came to an end, he recently received a kidney transplant and is currently recovering in the hospital.

Risk and reward

Packard Children’s Pediatric Transplant Center has become a destination center for the highest-acuity children needing lung, liver, kidney, heart and intestine transplants, as well as highly complex, multi-organ transplants. The center offers transplant as a treatment option for patients with a wider variety of conditions than ever before. That breadth of experience with the highest-risk patients has led to achieving excellent outcomes for the youngest, smallest and sickest organ-failure patients in the world.

“We bring children here from other transplant centers because we’ll take cases that other centers haven’t done before, such as children with certain genetic or metabolic disorders” says Gossett.

“We’re known for being willing to take a chance on these kids when no one else will.”

A list of her own

Of course, these remarkable young people often have their own set of goals to achieve beyond getting a new organ—or two, as the case may be. For 15-year-old Miranda Weise, that means leaving behind a series of heart operations, which she’s endured since she was a baby, and looking ahead to getting her learner’s permit, going to college, and spending time doing what she loves most: caring for animals.

Miranda was born with hypoplastic left heart syndrome, and like many children with this condition, she had a series of surgeries that allowed her to survive, including the Fontan procedure. Last year, she went into heart failure after an infection, and her condition spiraled quickly.

“One of the principal consequences of the Fontan procedure is that the liver can slowly become injured, and in Miranda’s case, that accelerated quite a bit when she got sick,” says cardiologist Daniel Bernstein, MD, who has cared for Miranda most of her life. Dr. Bernstein determined that the best course of action was to do both a heart transplant and a liver transplant. This combination is rarely done. Packard Children’s pioneered the procedure 10 years ago, and the team has since performed at least a dozen of these transplants.

“I feel lucky to be alive,” says Miranda. Her mom, Lisa, agrees, saying, “We feel very blessed.” She adds, “While going through all of this, I’ve told Miranda that she’s my hero. All of the poking, prodding, tests—she was a trouper. She’s got a lot of strength.”

For the first time in her life, Miranda has all four chambers of her heart pumping normally. Back at home, she’s happy to be reunited with her three cats, dog and guinea pig. She’s looking forward to summer, when she can work with the animals at the county fair. Dr. Bernstein is helping the family to plan how Miranda can do that while staying safe.

“We do transplants with the idea of getting kids back to normal—not just getting them to survive or having them live in a bubble,” – Daniel Bernstein, MD

“It’s about getting kids like Miranda back in school, going to the movies with friends, having fights with their parents—all of the things kids are supposed to do as they grow up.”

Learn more about registering to be an organ donor at RegisterMe.org.