{"id":3522,"date":"2014-08-20T23:20:45","date_gmt":"2014-08-20T23:20:45","guid":{"rendered":"https:\/\/lpfch.org\/a-league-of-their-own\/"},"modified":"2024-09-13T18:05:21","modified_gmt":"2024-09-13T18:05:21","slug":"a-league-of-their-own","status":"publish","type":"post","link":"https:\/\/lpfch.org\/ko\/impact-stories\/a-league-of-their-own\/","title":{"rendered":"\uadf8\ub4e4\ub9cc\uc758 \ub9ac\uadf8"},"content":{"rendered":"

Meet Karina<\/span><\/p>\n

Karina Barreto-Delgado was sitting in her high school English class on a typical Friday morning, taking a test, when the call came. For six months, the 15-year-old resident of Visalia, Calif., had been on the national organ registry, waiting for a new liver and kidney. Now, in the fall of 2009, she and her parents were in the car, speeding past the orchards on Route 99 toward Lucile Packard Children\u2019s Hospital, more than 200 miles away.<\/p>\n

For as long as she could remember, Karina had been battling with methylmalonic acidemia, a genetic disease in which the body is unable to process certain proteins and fats properly. Since infancy she had been in and out of the hospital \u2014 vomiting, dehydrated, feverish and weak. The only treatment, prior to a combined liver-kidney transplant, was a severely restricted diet that included no protein or potassium.<\/p>\n

\u201cI was pretty much on noodles and rice,\u201d she recalls. Eventually I started losing muscle from my legs down, and I was disabled for a while. I couldn\u2019t get around without a walker.\u201d<\/p>\n

As she checked into the hospital, Karina felt frightened. News of the organ donor match had caught her off guard, and everything was happening so quickly. But as the staff in the Pediatric Intensive Care Unit calmly swung into action, she began to settle down.<\/p>\n

\u201cI remember I was sitting on the bed, looking at my mom, crying and praying so much,\u201d she recalls. \u201cThen I just remember feeling kind of woozy and tired, and I was asleep. That was a Friday afternoon. When I woke up it was Sunday.<\/p>\n

\u201dKarina\u2019s transplant surgery, which started at 3:40 a.m. on Saturday, occurred in two parts: first, a team led by Carlos Esquivel, MD, PhD, transplanted the liver, which took about four hours. Then a team led by Waldo Concepcion, MD, FACS, took over and spent the next three hours transplanting the kidney.<\/p>\n

After the surgery, Karina spent two and a half weeks recovering at Packard Children\u2019s, followed by two more months living nearby at the Ronald McDonald House. Today, with her precious new liver and kidney, plus lots of physical therapy, the 19-year-old is walking again without any assistance at all. She also can eat pretty much anything she wants, as long as it\u2019s low in protein. Her favorite food? \u201cPotatoes,\u201d she says, laughing. \u201cThey\u2019re my all-time favorite vegetable.\u201d
\nA Storied History<\/p>\n

Stanford surgeons have been performing organ transplants since 1960, when a team led by Roy Barnett Cohn, MD, performed the first successful kidney transplant in the western United States. The 47-year-old male patient received a kidney from his twin brother and spent two months recovering in the hospital.<\/p>\n

Today, surgeons at Packard Children\u2019s safely and routinely transplant kidneys and livers into some of the sickest, smallest children. Intestinal and multi-organ transplants like Karina\u2019s have progressed from experimental procedures to lifesaving therapies. Nearly all pediatric transplant patients are out of the hospital within weeks, and their chances for long-term survival are excellent. According to data released in 2012, Packard Children\u2019s pediatric kidney and liver transplant programs both achieved 100-percent survival rates for patients one year post-transplant. They also have one-year organ graft survival rates of over 98 percent, compared to 89 percent nationally.<\/p>\n

Perhaps the greatest key to this success is teamwork. Back in 1995, when Packard Children\u2019s launched its abdominal transplant programs, the hospital recruited a stellar group of surgeons, physicians, and support staff who had been training and working together for more than 10 years at the University of Pittsburgh and California Pacific Medical Center in San Francisco. Among the prominent additions to the Packard team were Oscar Salvatierra, MD, professor emeritus and past director of Pediatric Kidney Transplantation; Esquivel, the Arnold and Barbara Silverman Professor in Pediatric Transplantation and chief of the division of transplantation; and Concepcion, professor of surgery and now director of Pediatric Kidney Transplantation.<\/p>\n

In Concepcion\u2019s opinion, bringing together such a well-oiled, nationally recognized team \u201cwas the smartest decision ever. Instead of reinventing the wheel, Packard Children\u2019s Hospital said, \u2018Let\u2019s bring in a group of people who already know how to do it, and have them foster an environment of success here.\u2019\u201d<\/p>\n

Today, he says proudly, \u201cWhenever we have a transplant, you don\u2019t even have to blink; there\u2019s a system already in place. It\u2019s a whole institutional thing. We have an outstanding medical staff, dedicated operating rooms for pediatric transplant, dedicated anesthesia \u2014 that\u2019s huge \u2014 and dedicated people in the pediatric intensive care unit who work with us consistently. Why is that important? Patterns of care \u2014 everybody knows what we are thinking and what we are expecting, and we communicate efficiently. Everybody should be excited about having a transplant program like this.\u201d<\/p>\n

Making the Call<\/h2>\n

In a cramped office building on Welch Road across from the hospital, Gerri James, RN, BSN, CCTC, is making yet another phone call. Packard Children\u2019s has the highest volume of pediatric kidney transplants in the country, and on any given day, the lead kidney transplant coordinator might have to keep track of 100 children who are waiting for transplants or evaluations.<\/p>\n

\u201cThere\u2019s a lot going on!\u201d James says with a gentle laugh. \u201cI am often the first person that the parents hear from when their children are referred for transplant. It\u2019s always a stressful time, but my job is to tell them, \u2018Rest assured, we are going to make this as easy as it can get. We are on your side and are going to help you through it.\u2019\u201d<\/p>\n

In addition to acting as liaison between referring physicians and Packard Children\u2019s, James and her counterpart, Debra Strichartz, RN, BA, CCTC, liver transplant program manager, help families line up all the support they will need, from insurance companies and pharmacists to medivan drivers and therapists. They also play a key role in educating the families \u2014 often through translators \u2014 about what to expect before, during, and after surgery.<\/p>\n

When families are worried or discouraged about the wait for a donor organ, James and Strichartz are there around the clock to answer questions and provide encouragement. When donor organs finally do become available, it\u2019s their privilege to phone with the news.<\/p>\n

\u201cNo matter how tired you are\u2014and the calls rarely come during the day \u2014 it\u2019s super exciting,\u201d James says. \u201cOn the one hand, you realize, \u2018Wow, this is a terrible loss for the donor family.\u2019 But on the other hand, you see all the good that comes out of it.\u201d<\/p>\n

Just the other day, at Packard\u2019s nephrology clinic, James ran into one of her most recent success stories: a strawberry blond 2-year-old named Sydney Walter. Sydney\u2019s family previously lived in Hawaii, and while she was still in utero, doctors determined that her kidneys were damaged by a blockage in the flow of urine. For the first few months of her life, they were able to help her with medication, but eventually it became clear that Sydney would need dialysis and a transplant.<\/p>\n

Seeking the best care possible, the military family packed up its belongings in Oahu and moved to California to be near Packard Children\u2019s. Sydney was put on lifesaving dialysis for a year until she could grow to the ideal weight. Meanwhile her mother, Brittany, who would be Sydney\u2019s organ donor, was recovering from the birth of Sydney\u2019s little sister. Finally, in August 2013, when Concepcion transplanted mom\u2019s healthy kidney into Sydney, everything went like clockwork.<\/p>\n

\u201cThey told us to expect to be in the hospital two or three weeks minimum, but Sydney was only in the hospital eight days,\u201d Brittany marvels, just a month after the transplant. \u201cWe had great family support; an awesome team.\u201d<\/p>\n

\u201cIt takes a village,\u201d notes Paul Grimm, MD, medical director of the kidney transplant program. Sydney\u2019s care before, during, and after transplant involved nephrologists, nurses, nutritionists, social workers, psychologists, transplant pharmacists, surgeons, and many more crucial players. \u201cWe have a large and dedicated team that lives and breathes this work, and we get to celebrate with children as they grow up,\u201d Grimm adds.<\/p>\n

Down the road, Sydney will need to see an occupational therapist at Packard Children\u2019s to help her learn to eat solid foods; like many young transplant patients, she has been depending on a feeding tube to provide her with enough liquids to keep her new kidney healthy. She\u2019ll also have to take immunosuppressant drugs for the rest of her life.<\/p>\n

\u201cShe\u2019s doing great,\u201d Brittany says, \u201cShe\u2019s just at the age where she is interested in princesses and tea parties. And she loves to be outside, climbing all over the place.\u201d<\/p>\n

On the Road<\/h2>\n

While the Walters were able to move to California, many other families can\u2019t relocate. That\u2019s where Packard Children\u2019s transplant outreach clinics can help. Several times each year, physicians and nurse coordinators from the kidney and liver programs travel to cities throughout the western United States, from Sacramento and Portland to Las Vegas and Honolulu. At each outreach site, they can check on referred patients and follow up with those who\u2019ve already had surgery.<\/p>\n

\u201cWe\u2019re like a road show,\u201d says Strichartz. \u201cIf someone is being referred to us, we can assess where they are on the spectrum: Are they ready for a transplant, or can they be managed medically before going on the list? Also, we see the patients with their local doctor. Best of all, the families get to meet us before they come to the hospital for transplant, so we can start our education process early.\u201d<\/p>\n

One of Strichartz\u2019s most memorable liver transplant patients was an impish 2-year-old Bakersfield boy who loved dinosaurs. Jackson Vaughan\u2019s first sign of trouble was small: a bump on the right side of his abdomen. But when a family physician took a look at it, he promptly arranged for the little boy to be seen at Lucile Packard Children\u2019s Hospital.<\/p>\n

\u201cWithin 10 minutes of the first doctor feeling his abdomen, we learned that Jackson had an advanced, very large tumor,\u201d his father, Jeff Vaughan, recalls. \u201cThat started the roller coaster downhill.\u201d<\/p>\n

Over the next few months, Jackson underwent chemotherapy at Packard Children\u2019s while endearing himself to the doctors and nurses in the oncology unit. Once the cancer had retreated, his medical team agreed that a full liver transplant would be the best way to ensure his survival.<\/p>\n

\u201cMost places would not give an organ to somebody with such advanced cancer,\u201d Jeff marvels. \u201cBut the core team, led by Drs. [Kenneth] Cox and Esquivel, really fought for him.\u201d<\/p>\n

Unfortunately, Jackson\u2019s tiny body rejected his first liver transplant, and when he was put on a machine to replicate the liver\u2019s functions, his blood pressure dropped precipitously. For 36 long minutes, doctors in the pediatric intensive care unit struggled to restore Jackson\u2019s heartbeat. A final jab of epinephrine to the heart did the trick. Miraculously, numerous follow-up tests showed no brain damage, and Jackson was cleared for yet another transplant.<\/p>\n

This time, it worked.<\/p>\n

Today, the tousle-haired 13-year-old is thriving in the eighth grade, with a 4.0 grade point average, a killer pitching arm, and dreams of being a professional baseball player. He doesn\u2019t remember much about the hospital \u2014 other than the frozen yogurt machine. But he\u2019s sure that his drive to excel comes largely from his time at Packard Children\u2019s.<\/p>\n

\u201cMy experience made me an underdog,\u201d Jackson says, thoughtfully. \u201cI like that, because you can show people what you can do \u2014 outsmart them all.\u201d<\/p>\n

More to Come<\/h2>\n

Looking forward, Packard Children\u2019s transplant specialists hope to build on their reputation for excellence and innovation to ensure even better outcomes for children. To minimize wait times for donor organs, for example, Esquivel has developed novel surgical techniques for splitting adult livers. This allows for two transplants, with the larger right lobe going to an adult, and the smaller left lobe to a child. \u201c<\/p>\n

Our next steps,\u201d he says, \u201cinvolve using donor stem cells to induce tolerance for the new organs, creating an artificial liver as an external backup system, and developing better mechanisms for preserving the organ before it is transplanted.\u201d<\/p>\n

As for kidney transplantation, Packard specialists were among the first to successfully transplant adult-size donor organs into infants. They were also the first to suppress organ rejection without the use of steroids. In addition, these specialists are able to desensitize the immune systems of patients who otherwise have a very low likelihood of finding a compatible kidney. There is also work being done to help infants and children with abnormal urinary tracts avoid renal failure and transplants altogether. Another exciting development on the horizon is the use of genetic profiling to determine a child\u2019s inherited likelihood of organ rejection, and to tailor post-transplant medications.<\/p>\n

Finally, there\u2019s that perennial challenge: teenagers. About 60 percent of transplant patients at Packard Children\u2019s are adolescents, and unless they take ownership of their new organs, and agree to follow their post-transplant medication regimens faithfully for the rest of their lives, all the good work done in the hospital can be undone.<\/p>\n

\u201cThat\u2019s one of the most difficult aspects of our work: ensuring compliance,\u201d says Concepcion, who is himself a father of three adult daughters.<\/p>\n

To solve this problem, Packard Children\u2019s offers a unique teen clinic that prepares adolescents to assume responsibility for their health as they juggle relationships, school, and work. \u201cHopefully we also can develop more long-acting medications with fewer side effects,\u201d Concepcion adds. \u201cThis, more than anything, will improve their quality of life.\u201d<\/p>\n

Meanwhile in Visalia, potato-lover Karina Barreto-Delgado is almost out of her teen years now. So is her younger brother, Angel, who in November 2012 also received a combined liver-kidney transplant at Packard Children\u2019s for the same genetic disease. This fall, he celebrated his 17th birthday.<\/p>\n

\u201cHe\u2019s a senior in high school now, doing pretty good,\u201d the 19-year-old says proudly. \u201cMy own graduation ceremony, from San Joaquin Valley College, was just last week.\u201d Karina\u2019s dream job? To be a medical assistant at Children\u2019s Hospital Central California \u2014 working with kids who have kidney and liver problems, just like she did.<\/p>\n

This article appeared in the Lucile Packard Children\u2019s News publication in Fall 2013.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

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