You’ve heard of a triple play in baseball. Well, one young man has had a triple play in pediatric transplant, and he’s the only one at Stanford Medicine Children’s Health ever to do so.
Joseph (Joe Joe) Sanchez-Munoz loves to dance, especially to Karol G and Bruno Mars. After his recent heart transplant at age 18, he asked his social worker if he could borrow the hospital’s helicopter to go to a Bruno Mars concert. He’s quirky and funny. And his doctors, nurses, and providers comment on his big smile, which is almost always spread across his face.
“No matter what life throws at him, he’s smiling,” says mom Elena Munoz.
A liver transplant before his first birthday
Although she was just 16 years old when she had Joseph, Elena approached the news that her baby was born with dysplastic kidney disease (underdeveloped kidneys), followed by liver cancer, with the grace and resilience of someone much older and wiser.
“The team was shocked that I was just 16, because I asked a lot of questions and got very involved in his care,” Elena says.
The cancer was causing Joseph’s liver to fail, so at 7 months of age, he came to Stanford Medicine Children’s Health for a liver transplant evaluation and a subsequent liver transplant. Remarkably, within three days of his being placed on the donor list, a liver became available. Donor organs for children can be hard to locate, so Elena felt extremely blessed.
“Elena has been solid from day one. She has given Joseph such resiliency,” says Gerri James, RN, BSN, CCTC, manager of the Pediatric Kidney Transplant Program.
Pediatric Liver Transplant—a top-performing program in the United States—is known for its highly complex care and provides all types of liver transplants, including living donor, whole liver, split liver, ABO incompatible, and combined solid organ transplants, with excellent outcomes.
Joseph’s liver transplant was a success, setting him on a lifetime journey of care at Stanford Children’s.
A second look at his dysplastic kidney disease
Joseph’s small kidneys had to work extra-hard to sustain him. As he grew, they became less able to keep up. When he was 7 years old, he returned to Stanford Children’s for a kidney transplant evaluation.
“Joseph’s kidneys were poorly formed and small. On top of that, he had a liver transplant and chemotherapy for cancer. Each of these are hard on the kidneys by themselves,” says Paul Grimm, MD, pediatric nephrologist. “The combination damaged his kidneys to the point where they couldn’t keep him healthy, requiring a kidney transplant.”
During the 10-month wait for a donor kidney, Joseph received fluid and medications via his gastrostomy tube (G-tube) to support his kidneys. The transplant coordinators were there every step of the way, always on call and available to the family, even calling in the middle of the night or on weekends when needed, or to give the good news that a donated organ had been found.
“Gerri [James] called me on a Saturday to say they had a kidney for Joseph. He couldn’t believe it, so he said, ‘Don’t play with me, Gerri!’ It has become a running joke between those two ever since,” Elena says.
A successful kidney transplant at age 8
The kidney transplant went well. Within 10 days, Joseph was discharged from the hospital.
“We stayed really mindful of his other organ systems and worked collaboratively with those care teams to care for Joseph, and his mom was a fierce advocate,” says Cynthia Wong, MD, director of Pediatric Dialysis, which offers the most advanced dialysis technology in the nation.
The Pediatric Kidney Transplant Program is an identified Center of Excellence that has performed more pediatric kidney transplants than anywhere else in the country, and their one-year and three-year survival rates are also the best in the country—unsurpassed at 100%.
“We aim to be world leaders in kidney transplant. We conduct a lot of research here, and there’s immense commitment amongst our large team. It’s all part of our secret sauce,” Dr. Grimm adds.
Joseph showed his gratitude for his new kidney by taking good care of it over the years—drinking three liters of water every day and faithfully taking his medications. This, along with exceptional care from his mom and the kidney transplant team, meant that Joseph’s kidney stayed healthy longer than usual. The average deceased-donor kidney functions for 11 years, yet his was going strong after 10 years—right when he would need his third transplant, a heart transplant.
Identifying Hao-Fountain syndrome
Along with his liver cancer and kidney disease, geneticists at Stanford Children’s diagnosed Joseph with extremely rare Hao-Fountain syndrome. He is probably the only person in the world with this syndrome to receive three transplants while still a child.
Syndromes are a group of seemingly unrelated symptoms, while a condition tends to have one clearly defined cause. Syndromes can be tricky to identify, especially ones as rare and newly discovered as Hao-Fountain – with fewer than 100 known cases worldwide.
“Children with genetic syndromes are sometimes denied transplant because of inexperience or a presumption about quality of life. But we have the philosophy that every patient’s life is precious, and every child can have a joyful life after transplant,” says Seth Hollander, MD, medical director of heart transplantation with the Stanford Children’s Pediatric Advanced Cardiac Therapies program. “That’s why we are happy to take care of kids like Joseph, and we have the strength and expertise to do so.”
The heart jumps into the mix
Last winter, Joseph made a trip to the Emergency Department at Stanford Children’s for what Elena thought might be asthma. Instead, a Pediatric Cardiology fellow identified heart failure. Joseph had cardiomyopathy—an unusually weak and stiff heart muscle.
“We couldn’t believe it. We thought his heart was his strongest organ,” Elena says.
She is extremely grateful to Stanford Children’s for accepting Joseph for heart transplant because she understands how risky an organ transplant is after a patient has already had two. Joseph’s was the first of 500+ pediatric heart transplants on a child with two previous organ transplants at Stanford Children’s. As you can imagine, it’s a rare need.
Heart doctors named Joseph’s past chemotherapy for liver cancer as one likely reason for his heart failure. To determine the best care approach, the Betty Irene Moore Children’s Heart Center Pediatric Advanced Cardiac Therapies (PACT) (heart failure/heart transplant) team worked closely with his liver and kidney transplant teams. The Heart Center has a national reputation for taking on highly complex cases.
“Within our comprehensive Pediatric Transplant Center here at Stanford Children’s, we have a tight collaboration among all our transplant teams,” Dr. Hollander says. “In many places, transplant teams act separately, but we behave as one big team because we commonly do multiorgan transplants together. This helped us navigate the unchartered territory of caring for a child who had two previous transplants.”
When a heart is failing, it can affect other organs, particularly the kidneys. Add in immunosuppression medications from past organ transplants, and you’ve got an even more complicated scenario, because these anti-rejection medicines are hard on the kidneys and liver.
“The heart and the kidney are like the siblings that love each other but fight a lot. You have to find the balance to keep them both happy,” says John Dykes, MD, cardiologist. “Luckily our fantastic liver and kidney teams assured us those organs were working well. In the end, we couldn’t find a reason why we shouldn’t do Joseph’s heart transplant—even though the circumstances were strange and unusual.”
The kidneys naturally like the body to be well hydrated, whereas the heart tends to like it dehydrated. And putting a patient on a heart bypass machine during transplant is also difficult on the kidneys. All of these challenges meant that the multispecialty care team had to be extra-skilled at balancing the needs of Joseph’s organs in order to pull off a successful heart transplant.
“Many other heart centers would say no and label Joseph too high-risk and worry about trauma on the body, but we are a multidisciplinary team that works really well together. We’re used to collaborating to make good decisions to move these kids forward,” says Michael Ma, MD, heart transplant surgeon.
Joseph has a clever saying about the three organs, which goes like this: “The liver just hangs out, the kidney is sassy, and the heart is dramatic.” Dr. Hollander agrees, saying that if the heart is happy, the other organs tend to be happy, too.
“It is amazing to have doctors who believed in Joseph—liver, kidney, and heart—they all got together to find the best plan for him,” Elena says.
A heart transplant at age 18
Joseph was in severe heart failure, and he was getting sicker every day. The heart team anticipated a long wait for a donor heart, but remarkably, a heart became available in just five days.
“I was blown away. Every organ donor is an angel, and I felt like the angels came through,” Elena says. “Joseph is my miracle.”
While his heart transplant went as planned, Joseph had a longer recovery than might have been expected with a one-and-only heart transplant. Understandably, his heart needed a little extra time to relax and settle in.
“The liver and kidney teams really knocked it out of the park, but I told Mom this third time around would be a bumpier road,” Dr. Dykes says.
Going the extra mile to make his heart transplant recovery easier
After Joseph’s heart transplant this past spring, members of his liver and kidney teams came to visit to break up his days during his four-month stay. The heart transplant team gave him a plush heart, and James, his kidney pretransplant coordinator, brought him a stuffed kidney and liver to complete his set.
“Joseph is an inspiration. He braves everything with a smile, so if he got down, we all felt it,” James says.
Joseph turned 19 a week before leaving the hospital. His room was transformed into a party scene, with balloons, a beautifully decorated chocolate cake, and the staff singing “Happy Birthday.” Elena brought homemade dishes to share with the care team.
Yet, the family’s most memorable moment was when the care team helped Joseph achieve his personal passion of making music. His music therapist with Child Life and Creative Arts helped him write, sing, and accompany an original song about his care journey on guitar, inspired by a Bruno Mars song. It’s called “Dancing With His New Organs.” He takes listeners through his three transplants, referencing his care team and donors.
“My favorite line is, ‘Happy and proud to be alive.’ I see that in Joseph every day,” Elena says.
Steady care through the years
Two providers have been with Joseph since the beginning: transplant coordinators Audrey Fong, MS, RN, CPNP, and Lynn Maestretti, MPH, MMs, PA-C. They met him as a baby during his liver transplant. They watched him grow and provided continuity of care throughout his transplants, which is vital for kids with complex health histories. Fong is his kidney transplant coordinator today.
“I was just reminiscing with his mom about his little custom lab coat that said, ‘Dr. Joseph,’ and his scrubs, stethoscope, and notebook,” Maestretti says. “He has always been so fun-loving and a joy to be around.”
In the Pediatric Transplant Center, teams care for the whole family. Honoring the family’s wishes and helping them understand and cope with medical procedures is paramount. Fong remembers how young Joseph always insisted on leading a prayer every time before having an IV inserted.
“He’d stop us and say, ‘I just need everyone to take a moment to hold hands and pray with me first.’ Of course, we all honored it,” Fong says. “It helped him be less anxious and ready to go.”
Gearing up for a bright future
Joseph is home, thinking about his future and finding joy in simply living his life. He is interested in going into the medical field—and, of course, someday attending a Bruno Mars concert.
“There’s still plenty ahead for Joseph. We can’t wait to see what he does next,” Dr. Dykes says. “There will be work and some ups and downs to care for his past transplants and his new heart, but he’s off to a good start.”
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