Handprints - Spring 2004 - Children`s Hospital Oakland
Transcription
Handprints - Spring 2004 - Children`s Hospital Oakland
! nt edie n’t A C H I L D R E N ' S H O S P I TA L & R E S E A R C H C E N T E R AT O A K L A N D P U B L I C AT I O N ay my s if yo u Ic ha ve a ll, don’t c om e in! a pi e HandPrints w a e v i g caution: smiles are Adriana: c ? m y bike not just another g io us pat ient page7 ca nI ride on ta n e h w inside: spring 2004 thinking big • PAGE 10 sugar breakdown, research breakthrough beyond borders CHILDREN’S PLAN TO BRING OBESITY UNDER CONTROL • PAGE 16 SCIENTIST FIGHTS PREVENTABLE BLINDNESS FIRST EVER DRUG THERAPY FOR RARE DISEASE • PAGE 20 2 CHILDREN’S HANDPRINTS calendar OF events table of contents 5 M AY Auntie Anne’s, Costco Wholesale, Rite-Aid and WalMart Children’s Miracle Network Balloon campaigns underway. 3 4 HEALTH FACTS 5 THIS AND THAT One of a Kind Children’s draws on experts from many specialties to provide unique care to kids with little-known disease. Getting Into Character Movie star Juilet Binoche gets a science lesson from a Children’s researcher. 12-14 Children’s Circle of Care National Leadership Conference and Gala in Washington, DC. 510-428-3885, ext. 2789 7 Notes That Heal Stressed? Area musicians want to soothe your day. 7 Springtime Gala at Oakwood, hosted by the Grateful Families Program, Oakwood Athletic Club, Lafayette. 510-428-3885, ext. 5344 or www.gratefulfamilies.org 10 10 16 20 18 RESEARCHER PROFILE Beyond Borders A Children’s researcher found the path to her career in the mountains of Nepal. Her work could help cure the leading cause of preventable blindness in the world. 22 CHILDREN’S HOSPITAL & RESEARCH CENTER FOUNDATION Honoring Decades of Support The Walk of Honor recognizes those who have walked the talk by supporting healthcare for kids. Commitment, a Trust and a Legacy A family’s investment helps sick kids, supports leading-edge research, earns them a tax break and a lifelong income. 5 Rubber Ducky Derby, hosted by 14 10th Annual Northern California PHYSICIAN PROFILE What Makes a Good Physician Great When oncologist Caroline Hastings, MD, can’t ‘fix’ things, she can still make them better. for Children’s Hospital. Nor Cal Lawmen vs. Northern Valley Lions, 7:00 p.m., Diablo Valley College. 925-429-2758 Children’s Hospital Branches at Oakland Children’s Fairyland. 510-428-3355 FEATURE Sugar Breakdown, Research Breakthrough An experimental drug therapy may lower the physical and psychological toll of a rare genetic condition. 18 JUNE 3-4 Tax-Exempt Planning for the 5 Semi-pro football game benefit FEATURE Thinking Big You’ve probably already heard plenty about the problem of childhood obesity. Experts at Children’s are ready to tackle solutions. 26 Elegant, private reception Professional Advisor, 8 a.m. to 4:30 p.m., Research Center library. Presented by Children’s Hospital & Research Center Foundation. 510-428-3362 IN THEIR OWN WORDS Never Just Another Patient It takes a strong family to get through childhood cancer, but after fighting repeated relapses, Adriana emerged with an uncommonly sturdy spirit. 22 Residential Pacific Mortgage hosted by Mark and Rebecca Pine at their Alamo home for members of the Children’s Circle of Care. 510-428-3885, ext. 2789 DEAR READER Letter from the President 25 20 Golf Invitational for Charity hosted by Marriott and Sodexho, benefiting Children’s Miracle Network. 510-428-3885, ext. 2983 15 Lombardy Branch Annual Garden Cocktail Party in Lafayette, benefiting the Center for Child Protection. 925-254-6959 w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg NEW SERVICE Old Friends, New Neighbors New clinic provides specialty services in Marin County. SPRING 2004 dear reader: This is our history: For almost a century we have delivered the best healthcare possible to all children who needed it. 3 HandPrints A C H I L D R E N ' S H O S P I TA L & R E S E A R C H C E N T E R AT O A K L A N D P U B L I C AT I O N Children’s HandPrints is a publication of Children’s Hospital & Research Center at Oakland, 747 52nd Street, Oakland, CA 94609; 510-428-3000. Written, designed and produced by: This is our passion: To unlock the mysteries of the body so that we can prevent and cure human disease. This is our essence: People you trust caring for children you love. This is our wisdom: Our patients are kids today, but they will teach, cure, build and lead your communities tomorrow. Communications Dept. at Children’s Hospital & Research Center at Oakland 665 53rd Street Oakland, CA 94609 Phone: 510-428-3367 Fax: 510-601-3907 Tony Paap President and Chief Executive Officer Mary L. Dean Senior Vice President, External Relations This is our vision: To make sure that your kids, your neighbors’ kids, your colleagues’ kids, and their friends, and their kids, and grandkids and great grandkids…are healthy. Tina Amey Receptionist Debbie Dare Graphic/Print Designer Susan Foxall In this issue of HandPrints, I invite you to read about the ways in which we uphold our legacy, sustain our mission and accomplish our vision. Operations Manager Nina Greenwood Marketing Manager Cyril Manning Senior Writer Bev Mikalonis Media and Community Relations Director Tony Paap President and Chief Executive Officer, Children’s Hospital & Research Center at Oakland Vanya Rainova Publications Manager Editor Neile Shea Senior Web Designer Gary Turchin Writer Contributing Writers: Leanne Aboumrad Lisabeth Kirk Cynthia Romanov Cover portrait: Elena Dorfman 4 CHILDREN’S HANDPRINTS health facts A * When it comes to obesity in the United States, the public health outlook has declined dramatically—and with startling speed. In just 20 years, the prevalence of obesity has skyrocketed across the nation. Obesity Trends: The prevalence of obesity in each state soared between 1991 and 2002. [Center for Disease Control data] * No data <10% 10-14% 15-19% 20-24% >25% 1991 2002 t * * * * READ ABOUT HOW RESEARCHERS AND CLINICIANS AT CHILDREN’S ARE FIGHTING THE EPIDEMIC IN THINKING BIG ON PAGE 10. Caused by Chlamydia trachomatis, trachoma is the leading cause of preventable blindness in the world. READ ABOUT DR. DEBORAH DEAN’S WORK TO DEVELOP A VACCINE AGAINST THE BACTERIA IN BEYOND BORDERS ON PAGE 20. w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg WEIGHING IN ON SSRIs Children’s psychiatrist advises families to carefully weigh the efficacy of SSRI-type medications against concerns about the drugs’ safety. This spring, the Food and Drug Administration began warning doctors against prescribing the antidepressant medication Paxil, as well as most other drugs in the SSRI family, to patients younger than 18 years. Much of the controversy has stemmed from a British study that indicated an increase of suicidal tendencies among some patients taking SSRI-type antidepressants. For families who rely on SSRIs to manage a child’s clinical depression or other mental illness, this raises understandable concerns. However, Children’s psychiatrist Herbert Schreier, MD, cautions families to weigh the efficacy of these medications against their concerns about the medications’ safety. The significance of the suicide risk has been overstated, Dr. Schreier says. For example, while the British study found increased suicidality in 3.4 percent among children taking Paxil, it found the same suicidality in 1.2 percent of patients who were taking placebos only—indicating that only slightly more than 2 percent—a number that was not statistically significant—of children may have experienced suicidal thoughts or behavior due to the medication. The results are consistent with those found in other studies of drugs in the SSRI family. In addition, there were no actual suicides among all 1,700 subjects participating in several SSRI studies. Finally, Dr. Schreier points out, a 10-year epidemiological study conducted in the United States found that areas with increased use of such medications had a decreased rate of adolescent suicides. “SSRIs also have been found to be very effective treatments for potentially debilitating conditions, such as anxiety, panic disorders, post-traumatic stress disorder and obsessive compulsive disorder,” Dr. Schreier adds. “It would be very unfortunate for parents to withhold them because of recent negative publicity.” # SPRING 2004 this this this this that ANDthat ANDthat ANDthat AND this AND this this this 5 this this that ANDthat ANDthat ANDthat ANDthat AND that GRAND OPENING!: Jack (left) and Julia (below left) at the opening of the Jack & Julia Center for Tuberous Sclerosis Complex. Below, clinic director Candida Brown, MD, explains images of the brain. N I C K L A M M E R S / T h e O a k l a n d Tr i b u n e ONE OF A KIND In April, Children’s opened the Jack philanthropic foundations. Their efforts, & Julia Center for Tuberous Sclerosis paired with the expertise of Children’s not an uncommon genetic disease, but Complex, the only clinic in the region pediatricians from many different unless it’s touched someone you know, and one of just a few in the nation medical specialties, will provide new you’ve probably never heard of it. The dedicated to the disease. hope to more than 300 patient families Tuberous sclerosis complex (TSC) is condition—which causes benign tumors The families of Jack Leal and Julia that wreak havoc in vital organs, includ- Steenman, the TSC patients for whom ing the brain—can devastate physical the new center is named, raised funds and mental functioning, can strike early and awareness through garage sales in childhood or go undiscovered until later in life. Worst of all, there is no cure. Thanks to the financial support and advocacy of two Bay Area families, Northern Californians dealing with TSC can finally get comprehensive care from experts specializing in this complicated condition. and by making passionate appeals to every year. # GETTING INTO CHARACTER Juliette Binoche, the AcademyAward-winning star of the films Chocolat and The English H O L LY W O O D : Children’s researcher Julie Saba, MD, PhD (r) guides AcademyAward-winning actress Juliette Binoche on how to be a scientist. Patient, recently brought a bit of Hollywood glamour to the world of cancer research. 6 this this CHILDREN’S HANDPRINTS this this that ANDthat ANDthat ANDthat AND this AND this this this this this that ANDthat ANDthat ANDthat ANDthat AND that LIGHTS! CAMERA! ACTION!: [ clockwise] A film crew lights up the research institute to simulate daylight; Drs. Julie Saba and Bert Lubin, senior vice president of medical research, were joined by Binoche for a reception at Children’s to build awareness and financial support for Dr. Saba’s research in pediatric cancers, as well as other types of medical research. Binoche, who plays a research scien- created to lift the spirits of tist in her forthcoming film Bee Season, patients, families and staff consulted with real-life researcher Julie at Children’s. Saba, MD, PhD, while shooting scenes for the movie in a Children’s laboratory. The actress got an intimate view of Healing Notes features violinist (and program founder) Donny Lobree and Dr. Saba’s investigation of how particular local harpists Mitch Landry genes affect the life and death of cancer and Diana Rowan. They cells. It seems Dr. Saba’s character perform several times a coaching made quite an impression; month in the Outpatient the experience inspired Binoche to Center atrium and in make a special appearance at a recep- hospital waiting rooms. tion to raise awareness and financial Sometimes the musicians play lunchtime support for Children’s. # concerts in the cafeteria and bedtime L E T T H E M U S I C P L AY ! : Mitch Landry and Donny Lobree play notes that sooth and heal. lullabies for young patients. N O T E S T H AT H E A L The sweet song of a violin. The Lobree hopes that the soothing about it. It changes their energy, and power of the music has a ripple effect hopefully they bring that to the rest of soothing strum of a harp. A gentle throughout the hospital community. their day.” # melody weaving through corridors and “When people hear something into waiting rooms around the hospital. beautiful, it affects them, even if they This is the music of Healing Notes, don’t have the time to stop and think w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg SPRING 2004 7 of your child having the illness are less than one in a million. It is an aggressive type of leukemia, but new treatments promise a high success rate. Physicians explained to us the treatment that they wanted to use, and we read about the rare but possible complications. The doctors answered our questions over and over again until we understood the medical inforAs parents of four children we have had our mation. share of tending to colds, flu, ear infections and We checked in to the hospital, bracing for a the common bumps and bruises of childhood. two-month stay. I know “checked-in” makes it But the black sound as if we were in a hotel room during a bruises that marked the body of our vacation; that is exactly what Adriana daughter Adriana and did not made it feel like. She was busy checking IN THEIR go away were far from comout the hospital equipment, introducing mon. I consulted a home herself to the nurses and insisting on WORDS remedy book, but I also made an going to the playroom, as if we were on B Y LEANNE a field trip. Adriana looked so good and urgent appointment with our ABOUMRAD pediatrician. her spirits were so high, it was hard to Our journey began with a poke of accept that her life was so fragile. Adriana’s fingertip on that visit in 2000. The I felt numb for days. Adriana looked at me results of her blood test were off the charts, and said, ‘“Mom it must be bad because you literally. We were referred to a blood lab for a look terrible.” I knew then that I had to pull more comprehensive work-up. When we myself together for her sake. I asked my returned home, Adriana hopped on her bike husband to bring me shampoo so that I could and rode away. wash my hair for the first time in a week. I also I was serving dinner when the phone rang. asked that he bring a bag of Adriana’s favorite The person on the other end of the line games, music and books to keep her busy. instructed us to take Adriana to Children’s Hospital & Research Center at Oakland immediately. She told us we might have to spend the night there. At the hospital, more blood tests revealed our daughter had leukemia. All of a sudden the world around us was spinning at an impossible speed but we had to keep up; there was a lot to learn, understand and accept. What type of leukemia? A test of Adriana’s bone marrow confirmed the initial diagnosis and revealed Adriana had acute promyelocytic leukemia (APL). One of the first things you learn about APL is that the chances Never Just Another Patient Own 8 CHILDREN’S HANDPRINTS At the time, the hospital had not yet completed the construction of its new Blood and Marrow Transplant (BMT) unit—a special unit with an air-filtration system where kids whose immune systems are weakened by chemo can move about safe from germs. So our once-energetic daughter was soon like a very bad dream with no end. Explaining the loss of Adriana’s full head of hair to our younger daughter seemed like a mild concern. We were so happy to finally get to go home. Adriana returned to school after a summer of healing. Pediatric oncologist Jim Feusner, MD, and the oncology a new set of terms to learn and complications to consider. We feared the worst. Halfway through our ordeal, our insurance changed and our new provider asked us to go elsewhere for a transplant. We almost fell apart. We were convinced there wouldn’t be the same rapport or as much heart put into caring for Adriana. The passion and enthusiasm of Adriana’s Children’s Hospital role models have rubbed off on her. Q U E E N O F A L L T R A D E S : Adriana as a Brownie, Girl Scout, a baseball fan, hip teen-to-be, and tile artist; siblings Reena and Anthony. confined to her hospital room. She underwent her chemotherapy and was dependant on blood products, many antibiotics and IV hydration. Just two weeks into treatment Adriana started having complications; in fact, she had almost every complication on the list. During that time, I most fully appreciated the advantage of being in a hospital just for kids. There was almost no department at Children’s Hospital whose specialists did not participate in securing Adriana’s health. Cardiologists addressed her high blood pressure. Gastroenterologists helped her with her severe nausea. Radiologists and infectious disease doctors were called in to figure out the source of her inexplicable, long-lasting fevers. A dietician set up a special diet for Adriana to help her pancreatitis. An ophthalmologist examined her when she was color blind for a few days. The 12-week ordeal seemed w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg team kept a very close eye on her. They ordered monthly blood tests as well as a bone marrow aspirate and a polymerasechain-reaction test (PCR) every six months to monitor her for relapse. One year after our discharge, a PCR test showed the return of DNA mutations associated with APL in the blood. A second test did not assuage our fears; it confirmed them by showing even more mutations, meaning that a relapse was more than likely. Dr. Feusner and the director of the Blood and Marrow Transplant Program at Children’s, Mark Walters, MD, advised that we consider a bone marrow transplant as a way of staying one step ahead of an imminent relapse. The procedure, they explained, involved taking special, immature cells (called stem cells) from a donor’s bone marrow and giving them to Adriana. In her body the stem cells could grow to become healthy blood cells. Now we had Timely tests would have had to be rerun and time was of great concern because of the type of leukemia our daughter had. Going to another hospital could have made a difference of a cure. But staff at Children’s Hospital assured us that we could stay. They said they would bill the insurance company for most of the transplant and that the hospital would cover the remaining cost. They lived up to their motto of “no child turned away.” Adriana’s 12-year-old sister, Reena, became her bone marrow donor. For a transplant to be successful, donor stem cells should genetically match the patient’s cells as closely as possible. Adriana’s sister was a perfect match. Adriana’s transplant was a textbook case. Although she did have to endure more chemotherapy and treatments with blood products and antibiotics, there were no complications. We stayed at Children’s Hospital for two months. We were happy SPRING 2004 however, involved another prolonged hospitalization. This time, we stayed in the new BMT unit where kids are able to leave their rooms and mingle in the hallways and the playroom, which is open 24 hours. Unfortunately, Adriana was so sick and weak that she rarely got up to walk. The Infectious Diseases department was called upon again to study her charts to see why her fever was reaching 106 degrees. The hospital blood bank worked to secure much-needed and to return home as a family of six and enjoy the simple things in life. Adriana had to miss a year of school before her immune system became strong enough for her to go in crowds. She often baked cookies and brought them to her doctors and nurses at her monthly clinic appointments. Determined not to give in to sickness, Adriana ran—and was elected—for class office at school, earned her Girl Scout Bronze Award, learned to snorkel in the ocean and even snowboarded. Eighteen months after her transplant, a relapse shocked us. Adriana’s sister’s donor cells had been 98 percent in charge six months earlier, but the aggressive APL had its own agenda. It took two rounds of chemotherapy to get Adriana into remission. Some treatments were administered in the Outpatient Center Day Hospital, which meant that Adriana was often able to get treatment and go home for family dinners. The final round of chemo, hard-to-find white blood cell donations so Adriana’s body could fight a deadly infection. A physical therapist came to Adriana’s room to help her get back in shape. Friendly faces popped inside the room, and people offered to do anything that could bring us comfort at a very difficult time. In hope for a lasting cure, Adriana had to face a second transplant. We changed our insurance to lift any worry that we might have to go to someplace other than Children’s. We were at our darkest moment of fear for our daughter’s health. Dr. Walters suggested that this time Adriana’s older brother, Anthony, be the donor. They took stem cells from his bloodstream. In preparation for the transplant, Adriana had to endure fullbody radiation. The new rounds of chemotherapy and radiation placed so much stress on her body that she ended up in an isolation room in the Intensive Care Unit, fearing heart failure. The 9 efforts of the entire staff made it possible for her to return to the BMT unit. Tears came to my eyes to see her enjoying music lessons from Child Life staff. She loved working on projects with the Art for Life artist-in-residence in the playroom and participating in creating the tile art that decorates the newly redesigned hospital entrance. With nine months of agony during Adriana’s third bout with leukemia behind us, we were able to go home joyously. Every month Adriana is feeling better and better. Her “new” immune system is fighting her body. She has a mild graft vs. host disease that Dr. Walters is treating. That means greater hope for a long-term cure because the immune system is also fighting the cancer. We celebrated Adriana’s 11th birthday by letting her have a slumber party with her friends. She still bakes cookies for her nurses, who seem like family. She also bakes cookies by the hundreds for charity events that benefit kids. A food drive Adriana ran using hospital pillow boxes collected more than 3,000 food items. In March of this year, Adriana got an award from the Red Cross and the Oakland Fire Department for Outstanding Acts of Kindness for her community service. The passion and enthusiasm of the Children’s Hospital role models, around whom Adriana spent four years, have rubbed off on her. We don’t know what the future will bring, but we live at peace, knowing that we, as well as our care providers at Children’s, have done the best we can. I’m grateful to all of the hospital staff not only for the expert medical care they provided, but for the way they made us feel—as if we were their top priority, never “just another patient.” # 10 CHILDREN’S HANDPRINTS Thinking i BG Doctors and scientists at Children’s have an ambitious plan to bring child obesity under control. by Cyril Manning When Julie Blair brought her 9-year-old daughter, Janelle to their pediatrician last year, she wasn’t worried about a specific medical problem. Instead, she was looking for general advice about managing Janelle’s weight. “It wasn’t a huge problem,” says Blair. “But I knew she didn’t look like most of her friends.” I L L U S T R AT I O N S B Y N E I L E C . S H E A SPRING 2004 11 Janelle was about 25 pounds over Fifteen percent of U.S. children— and nearly 30 the ideal weight for her age, which easipercent of children in Oakland—are overweight. ly put her on track for high blood pressure, heart problems, diabetes risk and other serious health issues down the should address this issue, we realized it obesity has overtaken smoking as the road. Among other tests, Janelle’s doctor didn’t make sense to deal with just one number one cause of preventable deaths measured her cholesterol and found that small aspect of it,” Dr. King says. in the country, and that today’s kids are it was dangerously high. He recomgaining weight twice as fast as their parmended that the family eat more ents did at the same age. According to a healthly, and referred mother and HEALTHY KIDS, NOT SKINNY recent poll, Californians now see obesity KIDS daughter to a unique nutritional counas a bigger risk to children than unsafe Indeed, there are many reasons why seling program at Children’s Hospital & sex or drug or alcohol use. children—and Americans in general— Research Center at Oakland. “The problem has roots that are are getting fatter. Cheap, quick meal Until recently, tracking cholesterol very deep in our society,” says Janet options loaded with extra calories are in children Janelle’s age was unheard of, everywhere, from the and the health risks associprocessed foods in grocery ated with high cholesterol aisles to the much-maligned levels, such as heart attack yet unfalteringly popular and stroke, were of little fare of fast-food chains. In concern to pediatricians. Joey’s mom packs a addition, advertising for That’s not the case today. “Big Grab” bag of sugary sodas and snacks is Weight-related “adult” medFritos corn chips in his lunch. not only ubiquitous, but is ical problems are increasingAccording to the also targeted directly at ly common among Janelle’s nutrition information on the bag, children. As Children’s peers—a trend many how many friends should Joey endocrinologist Cathy Egli, experts see as foreshadowing share his chips with? MD, puts it, a generation of teens with “Our bodies have adapted cardiovascular disease. over thousands of years There’s little chance you to protect us against haven’t heard at least some starvation, but we’re not of this already. Child obesiKing, PhD, a Children’s research protected against excess. When we have ty has been making a steady stream of scientist who also chairs a federal panel availability of more and more, we take headlines ever since the U.S. Surgeon responsible for revising the nation’s advantage of it. Our diets have become General declared it an epidemic in nutrition guidelines. “Countering ‘super-sized,’ and so have we.” 2002. Fifteen percent of U.S. chilobesity is going to require thinking It doesn’t help that kids are moving dren—and nearly 30 percent of chilbig.” less, as well. Although the time kids and dren in Oakland—are overweight. At the core of the hospital’s response teens spend watching TV has remained Among Children’s patient population to the epidemic is a new, wide-ranging about the same over the last ten years, the issue is even more urgent; in 2002, program led by King called Healthy their combined TV, video game and 25 percent of patients were overweight Eating, Active Living (HEAL). The computer “screen time” has grown and 40 percent were considered “at risk” effort integrates obesity treatment, prephenomenally. Over the same period, (see “Who’s overweight and who’s vention, research and outreach. “When physical education has practically obese”, page 14). As recently as this we thought about how Children’s disappeared from many schools. The March, separate studies concluded that Portion Distortion Quiz There are 2.5 servings in one “big grab” bag, so Joey should share with one and a half friends! 12 CHILDREN’S HANDPRINTS NOT COVERED Despite health implications, most insurers don’t cover weight management. Ten-year-old Miguel may be one of the “fat kids” in his school, but his round cheeks frame an irresistible smile, and his family has always seen his 30 extra pounds as harmless baby fat. His pediatrician saw otherwise; Miguel’s weight and family history put him at risk for diabetes, so the doctor referred the family to a group nutrition counseling session at Children’s called Fit Families. There, Miguel and a handful of other kids learned about nutritional choices and getting active from Children’s dietician Karen Amorde-Spalding, MS, RD, CSP. By the end of the class, Miguel had a list of things he was going to do to be healthy—such as always eating breakfast, drinking milk and water instead of soda, and practicing his karate. And mom got shopping and cooking tips that would help improve the family’s diet. Attending such as a session is a luxury many families can’t afford. Fortunately, Miguel’s family didn’t pay a penny. That’s because Alameda Alliance for Health, a non-profit health plan serving the county’s Medi-Cal population, pays the full cost of Fit Families for its members. That kind of reimbursement is not the norm. “Until a weight problem impairs other aspects of a person’s life, insurers generally consider obesity to be a lifestyle choice—which means it’s not covered,”says Debbie Nielsen, director of Managed Care at Children’s. The idea of lifestyle choices, of course, misses the mark when it comes to kids. “Part of the problem is that the health insurance industry is generally geared toward adults,” says Nielsen. “Reimbursement rates are guided by Medicare which doesn’t include any model for things that affect children in a unique way.” Nielsen says there is a growing awareness in the managed care industry that weight issues need to be addressed. “The problem is that no intervention has been studied thoroughly and proven effective. In the absence of that, companies are approaching the issue in the same way they deal with smoking cessation: providing some limited benefit with regard to health education, but stopping short of paying for services as if they were medical treatments.” So, why does Alameda Alliance cover the full cost of Children’s nutrition education programs for its members? Elizabeth Edwards, director of education at the HMO, says the company sees obesity prevention as a matter of principle. “The potential health outcomes for people who reduce their risk of developing type 2 diabetes, heart disease, cancer and depression are clearly in line with our mission,” she says. “We believe that education empowers people to improve their own health.” # w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg problem is worse in poor and urban areas, including many Oakland neighborhoods. It’s enough to overwhelm parents concerned about their child’s weight. But families shouldn’t have to face the issue on their own—that’s why Children’s offers several programs to help families such as Julie Blair’s. Although her family began eating more healthy and became more active as soon as their pediatrician spotted Janelle’s high cholesterol levels, attending Way To Go Kids, a six-week group counseling program offered through Children’s Division of Clinical Nutrition, gave them the support and knowledge to embark on a long-term lifestyle change—not just a temporary diet. “That is exactly the point of the program,” says Karen AmordeSpalding, MS, RD, CSP, director of Clinical Nutrition. “We aren’t concerned with making kids skinny, we want to make them healthy.” To that end, the Way To Go Kids sessions are led by a pediatric dietician who helps families better understand nutrition and their own eating habits, as well as come up with creative ways to get active. “It’s really a family issue, not a child issue,” says Amorde-Spalding. “We make a point never to single out the child. The whole idea is to instill healthy habits that the whole family can work on together.” For Janelle and Julie, that approach has proven successful: Janelle has lost weight. “At first, Janelle kind of had the attitude that she already knew this stuff, because we had already seen SPRING 2004 another dietician and we had talked about her weight,” says Blair. “But simply hearing, ‘This is what you can eat and this is how much you can eat,’ doesn’t compare to getting food choices and portion sizes out in front of parents and kids, the way this program does. Now, sometimes when I’m buying or ordering the wrong type of food she’ll catch me and say ‘Mom, we shouldn’t have that—remember?’” Children’s offers other weight management services as well—including singlesession Fit A typical cheeseburger 20 Families interyears ago had 333 ventions based calories. How many calories do on the Way To you think are in today’s Go model, indiaverage fast-food cheeseburger? vidual nutrition counseling, and a Portion Distortion Quiz 13 unique preventive pediatric cardiology clinic for children with advanced, weight-related medical problems. In addition, Children’s endocrinologists treat about 100 children whose type 2 diabetes is related, at least in part, to their weight. Each of these services predates the creation of HEAL, but collectively their expertise contributes to the strength of the new, broader program. PREVENTION IS KEY Even the most successful programs for treating overweight children are limited in the impact they can have. Today’s typical burger has 590 calories— 75 percent more than 20 years ago. 14 CHILDREN’S HANDPRINTS Waiting lists are often long, and most insurance plans won’t cover the cost of weight management services such as Way To Go Kids despite strong evidence that such interventions can reduce long-term healthcare costs. (One notable local exception is Alameda Alliance for Health.) Getting access to treatment can be a problem for families, and a system that relies solely on treatment options is equally frustrating for doctors, nurses and other care providers. “The key to solving the obesity problem is not treatment, but prevention,” says David Breland, MD, of the Children’s Teen Clinic. Together with Lydia Tinajero-Deck, MD, a Children’s urgent care physician, Dr. Breland will run the HEAL program’s monthly preventive clinic for kids who are at risk of being overweight. The clinic, which opens its doors in July 2004, is the centerpiece of the HEAL program. It will accept referrals from community physicians and other Children’s clinics; provide medical care and counseling; coordinate personal follow-up with nutritionists, kinesiologists and psychologists; and when necessary, send patients to experts in cardiology, endocrinology, psychiatry and other specialties. “When it comes down to it, primary care is all about prevention,” says Dr. Breland. “As a physician, it can Who’s overweight and who’s obese? It’s fairly simple to define what’s overweight and obese for adults. Professionals rely on a measurement called Body Mass Index, or BMI. BMI is a mathematical formula based on weight and height. Although BMI isn’t an accurate measure of fat for muscle-bound athletes, it works pretty well for most adults. In general, adults with a BMI of 25 to 29.9 are considered overweight, while adults with a BMI of 30 or higher are considered obese. The term “obese” is generally not used to describe children, however. Desirable BMI varies with gender and age. Because of this variance, kids’ BMI scores are considered relative to their peers. Children and adolescents whose BMI score is higher than 95 percent of people their age and gender are considered overweight; those with a BMI between the 85th and 95th percentile are considered “at risk of overweight.” Although children are generally not referred to as obese, the public health issue is commonly referred to as an “obesity epidemic.” Calculate your BMI: BMI = Weight in Pounds (Height in inches) x (Height in inches) be frustrating to deal with problems after they’ve become very serious. What we really need to do is change lifestyles earlier. The HEAL clinic will screen for medical conditions that go along with weight problems—such as heart and respiratory distress, insulin resistance and type 2 diabetes, high cholesterol and sleep problems. We will also screen for the motivation to change, not just in the kids but in the family as well.” In addition to screening patients, the clinic will work with Children’s dieticians to provide nutritional “We don’t need new lab research to show us the benefits of fruits and vegetables. We need reserach that emphasizes real-world solutions.” – J A N E T K I N G , P H D , I N T E R I M D I R E C T O R , T R A N S L AT I O N A L R E S E A R C H w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg x 703 training; with kinesiologists and physical therapists to promote exercise; and with psychologists and psychiatrists to help children deal with the psychological and social burdens of being overweight. BEYOND LAB RESEARCH Dr. Breland has high hopes for the clinic’s success, but knows that it isn’t a complete answer to the problem. “The issue is almost never just about the child’s eating habits,” he says. “It includes the school—is there physical education? Are there soda vending machines? It includes the family—are the child’s parents overweight? Does the family sit down together for meals? And it even raises issues about ethnicity and culture—for example, we know that rates of obesity are greatest among SPRING 2004 Hispanic boys and African-American girls. There are many questions we need to ask in order to address this issue.” In the lab, researchers in Children’s Nutrition and Genomics program explore how genes, lifestyle and nutrition interact. They are finding that while diet can contribute to the risk of developing a number of diseases, the extent of those risks depends in part on an individual’s genetic makeup. But the focus of much of the research under HEAL isn’t your typical test-tube science; instead, HEAL will employ translational research, aimed at understanding how knowledge from the lab and clinic can be applied in the real world. to the community in a way that makes a lasting difference.” Such research projects are already in the works. Dr. Tinajero-Deck and her Urgent Care colleague Victoria Agnos, MD, are embarking on two projects with the support of the hospital’s Office of Multicultural Health and Children’s Research Center. One project will evaluate the effectiveness of Sports For Kids, a program that aims to promote activity and exercise among the students in several Oakland schools. The researchers also hope to introduce a bilingual, culturally sensitive nutrition education class in some of those schools, and measure whether it further improves outcomes. The second planned project will evaluate whether school gardens and nutrition workshops increase A 16-ounce Vanilla Frappuccino fruit and vegetable Blended Crème from Starbucks has consumption among 480 calories. How long would a participants. 100-lb child have to ride her “There are many bike to burn those calories? people and organizations out in the community doing innovative things to fight child obesity,” says Dr. TinajeroDeck. “But to be sustainable, these projects need to be “We don’t need new lab research to studied and validated. If we can look at show us the benefits of fruits and a project scientifically and say, ‘yes, this vegetables,” says Dr. King. “We need works,’ or if we can provide data that research that emphasizes real-world can help refine these programs so that solutions. You can’t just do nutrition they work even better, then the research and expect the government to programs will have a much better shot enforce whatever you’ve found to be at success.” Dr. Tinajero-Deck says it’s best for people’s health. Our challenge crucial that care providers go into the as scientists is to apply our knowledge community to address the obesity issue. Portion Distortion Quiz 15 “We can’t wait for the families to come to us, because by that time it’s too late,” she states. Ultimately, going into the community is exactly what HEAL aims to do. “It’s not enough to get funding to set up a program, gather some data, and then leave,” Dr. King says. “What would happen to the kids in that community when the funding for that research dries up?” To prevent that from happening, Dr. King and her colleagues in the HEAL program are building partnerships with community organizations from the public schools and local university programs to community health centers. “The problem with many of us trained researchers is that we often read scientific papers and write our grants all by ourselves,” Dr. King says. “But we can’t afford to be isolated in an ivory tower; we have to spend time in the community and build partnerships with outside groups. We have to be ready to get our hands dirty.” # Depending on how fast she rides, she’ll need to bike 1 to 2 hours to burn off those calories. 16 CHILDREN’S HANDPRINTS by Vanya Rainova June 10, 2002 at her tiny Kendra says that people who don’t know her sometimes stare ures. body, her disproportionately large head and unusual facial feat speak loudly as if Occasionally, she adds, they approach her with “baby talk” or t and articulate she can’t hear or understand. Kendra, who is a very intelligen 17-year-old woman, often feels embarrassed for these strangers and worries would make them that letting them know how wrong their perception of her is feel terribly awkward. Dr. Paul Harmatz examines Kendra March 19, 2004 also draws intricate Claudio’s command of the Nintendo machine is enviable. He oonist. Claudio has robots and monsters. At age 10, he dreams of becoming a cart two weeks at the not had any antibiotics for about a year. He used to spend a year. hospital, taking intravenous antibiotics at least three times c d a e c March 21, 2004 nd of the Eight-year-old Isabella’s face brightens the stark white backgrou of clear liquid, Children’s Day Hospital. An IV line connects her arm to a bag a limousine but in her imagination Isabella is already living tomorrow when her to Disneyland. will pick her up from her family’s Bay Area hotel and take any of the fast Her doctor, Paul Harmatz, MD, reminds her she can’t take l the mermaid. rides – her neck is too fragile – but she will get to meet Arie w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg SPRING 2004 Isabella with Ariel the mermaid. Claudio with his mom, Sonia Costa e s The lives of Kendra, Claudio and Isabella are in many ways as different as one can imagine. They share neither culture nor language. They’ve grown up in South Dakota, Portugal and the Dominican Republic respectively. But the stories of their childhoods converged at Children’s Hospital & Research Center at Oakland, where they participated in a clinical trial of the first-ever drug treatment for a disease that could claim their lives by the time they reached 20. Kids with Maroteux-Lamy syndrome, or mucopolysaccharidosis (MPS) VI, lack an enzyme that is required for the breakdown of a complex sugar (glycosaminoglycan) into simpler mole- 17 cules. Without the enzyme, this sugar remains in the cells, accumulates in the tissues and causes severe damage. Because this sugar is normally found in connective tissue, the disease affects the skeleton, the heart valves, the spleen, the liver and the cornea, to name a few. Kids born with this genetic disorder have short stature, joint stiffness, respiratory problems, cardiac insufficiency, and vision and hearing loss. The physical and emotional challenges they face are enormous. “You have to adjust to the world,” Kendra’s mom, Betsy Gottsleben, says, “because the world’s not going to adjust to you.” There is no approved drug treatment. Bone marrow transplantation may result in a cure, but the risks are huge and chances of survival, slim. In October 2000, a Novato-based drug company called BioMarin Pharmaceuticals announced that it was ready to begin testing the safety and efficacy of an enzyme replacement therapy for MPS VI. The therapy relies on a synthetic enzyme, called Aryplase, that mimics the body’s own mechanism for breaking down glycosaminoglycan. The company selected Children’s Hospital as the only site for Phase 1 of the trial. The synthetic enzyme was well tolerated by all six patients and results suggested that it broke down the sugars that otherwise accumulated in the patients’ tissues. Early in 2002, Claudio and his mom, Sonia Costa, arrived at Children’s for the Phase 2 study that enrolled 10 patients in two sites, one in Oakland and one in Australia. (Kendra participated in that phase as well.) Their 20-hour trip from Lisbon to Oakland pales next to the length of their journey to a hope for a better, longer life for Claudio. “Claudio was about 18 months old when we noticed something was wrong,” Sonia remembers. “He had many respiratory infections, an umbilical hernia and his legs weren’t stretching out, which doctors told us was because of wearing diapers. But later, his facial features changed, too.” At age 6, Claudio was diagnosed with a different form of MPS, type I, which wreaks similar havoc on a child’s body and, unlike MPS VI, doesn’t spare the mind. The life expectancy is even shorter: 10 years. Sonia had her doubts—Claudio’s mental development, she thought, equaled, if not exceeded, that of his peers—but she accepted the diagnosis. “The day you learn your child may not live past 10 changes your life forever,” Sonia says. “A lot of things become insignificant. It is easy to distinguish the truly important things in life.” From their living room in Lisbon, the family mined for healthcare information [ C O N T I N U E D O N PA G E 2 7 ] 18 CHILDREN’S HANDPRINTS ONCE A WEEK, oncologist Caroline Hastings, MD, takes a plane to work. But despite the remote location of her off-site practice in Reno, Nev., Dr. Hastings has missed only three clinics in the last 12 years, one after she had each of her children. “Up until I was out to here,” she says, extending her arms wide, “I was boarding airplanes.” In 1992, Dr. Hastings drove to Reno, borrowed space in a pediatrician’s office, and hung an oncologist’s shingle. At first, her practice was modest: she held a clinic once a month and had a trickle of patients, one or two a visit. Dr. Hastings put her stethoscope aside and tried a second hat: marketing. “I went to meet all the pediatricians in Reno and Carson City in their offices and gave talks and hosted dinners,” Dr. Hastings recounts. “I never did anything like it before; I was always a very shy person. Now one of my favorite things is to reach out to the community and do some public relations work.” The community reached back to Dr. Hastings. As her practice grew (she sees about 60 patients a month in her weekly clinic), her colleagues at the Washoe Medical Center, Reno’s most comprehensive acute-care hospital, asked her to move her office there. “What’s nice is that the whole Reno community has taken me in and befriended me,” Dr. Hastings says. “They completely trust me and they know how to reach me. We have a continual dialogue: when they need help, I’m there to help them; when I need help, they’re there for me. It’s wonderful to have that kind of work environment that far away.” Dr. Hastings attributes a lot of her success in Reno to the relationships she has nurtured. She says she plans to apply this model of building personal bridges to help the Children’s Hospital new specialty clinic in Marin grow. (See Old Friends, New Neighbors on page 26.) “It is fully my intention to go out in the community to meet physicians, tell them who we are, what we do and what services we can offer children,” Dr. Hastings states. “Taking information directly to them in an informal way, with personal contact, helps.” high number of relapsed leukemia.” Though leukemia has a high remission and cure rate, there are so many children affected, that relapsed leukemia is actually more common than a number of childhood cancers. In collaboration with the international Children’s Oncology Group, Dr. Hastings seeks new therapies and approaches to this life-threatening disease. “We’re trying to accomplish two things,” she explains. “One is to cure Good What Makes a Physician w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg As a result of Dr. Hastings’ community building, children from the Reno area are now routinely referred to Children’s Hospital & Research Center at Oakland to receive the specialty pediatric services they need. But Dr. Hastings is not only bridging remote communities, she is also straddling another line, that between clinical care and research. Leukemia, and particularly relapsed leukemia, claims the attention of what Dr. Hastings calls her ‘thinking side.’ “Leukemia is the most common cancer in children,” Dr. Hastings explains, “followed by a JUST CHECKING: Emily IDs her doctor, Caroline Hastings, MD. SPRING 2004 19 physician profile: C A RO L I N E H A S T I N G S , M D more kids, the other is to maintain the high cure rate and reduce the potential side effects of chemotherapy and/or radiation. As time goes on, we do continue to see increased cure rates (now approaching 90 percent in leukemia), but kids can be left with devastating complications related to chemotherapy by Gary Turchin or radiation.” For example, not all children with acute lymphocytic leukemia (ALL) require the same type of treatment, explains Dr. Hastings. “We’re trying to differentiate between subtypes and determine who needs more intensive therapy and who needs potentially new therapies or radiation. We’ve learned that maybe we can back off from the treatment in some cases.” One such group is boys with leukemia who relapse in the testes, a condition Dr. Hastings has studied extensively. This form of relapse occurs in about 2 percent of boys treated for ALL, and studies indicate that when the relapse happens late in the treatment, the boys have an excellent prognosis. “This is our leap of faith: we are going to eliminate testicular radiation for this group of boys, thereby preserving fertility and pubertal development, while hoping to maintain the same end result, a Great high cure rate,” Dr. Hastings says. Based on this hypothesis, Dr. Hastings has written the protocols for a study where she, along with her Children’s Oncology Group colleagues, will explore this new approach. “It’s very gratifying to contribute to the knowledge base in this area,” she states. “To study something, to improve a treatment, then actually use it on your patients, and see positive outcomes.” As excited as she is about the science of oncology, Dr. Hastings is the first to acknowledge that having the heart for being a pediatric oncologist is just as important as having the mind for it. Dr. Hastings encounters most families at a time of crisis. Few things can be more trying for parents than caring for a child with a life-threatening illness. That is why Dr. Hastings’ work requires patience, sensitivity and emotional wisdom, a lesson she learned early in her career. Dr. Hastings’ first patient as an attending physician, Michael, had a type of leukemia that he was unlikely to survive. Dr. Hastings grew very close to him and his family during the course of his treatment. In a way, this experience was a sad one; Michael did not survive his leukemia. But it was also a blessing in disguise—it taught Dr. Hastings that her role as a physician extends beyond applying her clinical competence to include being a compassionate, trusted, emotionally present companion to families during some of the most difficult, most emotional, most intimate moments in their lives. “Michael and his family taught me a lot by allowing me to participate in the process of his dying and their grieving, which I realize was so intimate and personal,” Dr. Hastings says. “It strength- ened my commitment to being an oncologist. Even thought my interest in oncology initially had been purely intellectual, I now realize that the emotional side of what I do is just as important to me.” The day before Michael died, he asked his mom to take him to Toys-R-Us. He walked up and down every aisle carefully, slowly. He looked at everything and finally he picked something out. ‘I want to give it to my sister,’ he said. “That was all he wanted, something special for his sister. It’s so moving to see how selfless a 5-year-old can be, how ethereal in many ways,” Dr. Hastings says. Dr. Hastings postponed a ski trip to Utah so she could be there for Michael and his family in the last days of the boy’s life. “As doctors, we are often uncomfortable with death,” she says,” because we’re used to ‘fixing things.’ Having this family tell me ‘you don’t have to fix anything, you don’t have to say anything, we’re just happy you’re here,’ taught me what makes a good doctor a great doctor: the ability to be there for a family as a trusted friend as well as a healthcare provider. I learned you don’t have to say something to make the pain go away, there are times when that’s not possible, but you have to be able to listen and support them. This has colored the rest of my practice.” # 20 Afghanistan CHILDREN’S HANDPRINTS Pakistan Iran ALAIN MCLAUGHLIN Arabian Sea LONG BEFORE SHE BECAME a senior research scientist at Children’s, Deborah Dean, MD, MPH, made a journey to the Kingdom of Nepal that changed the course of her career. Just out of medical school, Dr. Dean was working at an infectious diseases hospital in India. Taking a break from her work, she set out for Nepal to explore trekking in the majesty of the Himalayas. On that trek, she was struck by more than the jagged beauty of the landscape. “I got stuck in this little town while I was waiting for an overland bus,” Dr. Dean recalls, “and as I was looking around I noticed there were all these people who were blind.” Nepal is mostly an agrarian society living at high altitudes, and cataracts from UV exposure are common. Yet Dr. Dean learned from a colleague that many of the people she saw were suffering from blinding trachoma. “Here I was, working in an infec- w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg tious diseases hospital, and I’d never heard of trachoma before. It really piqued my curiosity.” Caused by a parasite called Chlamydia trachomatis, trachoma is the leading cause of preventable blindness in the world. There are more than 600 million people—or one tenth of the world’s population—whose eyes are infected with chlamydiae; 6 million are already blind or severely visually impaired. In some parts of third-world countries, more than 90 percent of the population is affected. Chlamydia trachomatis has a variety Nepal trachoma is caused by repeated eye infections that scar the underside of the eyelid. The eyelashes then turn inward, India scratching the surface of the eye and allowing bacterial infection to occur in the cornea (the clear part of the eyeball). The infection eventually heals by scarring over, resulting in blindness. Dr. Dean refers to the series of random occurrences following her first encounter with trachoma as a “kind of serendipity.” She found herself attending a meeting for a Nepalese non-profit organization dedicated to investigating blindness. There, she met two Nepali ophthalmologists with whom she shared her interest in learning more about the disease. By the end of the conversation, she had been invited to work in NepalSri to help solve the problem of trachoma. “It was kind of like being in the right place at the right time to make these contacts that you have no idea will have such a major impact on your life Indian and your career,” she says. That was 18 years ago. Dr. Dean has Ocean been traveling between the United States and Nepal ever since. “Until I got married and had kids, it really was a second home to me,” Dr. Dean says of Nepal. The biannual visits “home” are not B B B Lanka Beyond Borders Border by Lisabeth Kirk of strains. Some strains (the kinds most Americans have heard of ) cause sexually transmitted diseases (STDs), while others cause eye infections. Blinding merely social, however. They involve collecting clinical samples from the populations most affected by trachoma in order to analyze them with the SPRING 2004 China 21 researcher profile: D E B O R A H D E A N, M D , M P H sophisticated laboratory technology eliminated it from industrialized populaavailable at Children’s. tions. Such a change in socioeconomic Bangladesh Helping the Nepali people with the status is not likely to occur any time problem of trachoma has proven to be soon in the developing countries where Vietnam no small feat, however, especially given the contagion of Chlamydia trachomatis Myanmarcircumstances of the the environmental is highest. Laos populations most affected by the “It’s important to keep in mind that disease. if the entire planet were developed, we “You’re talking about people who go wouldn’t have this disease,” Dr. Dean Bay of down to the river to collect drinking points out. Acknowledging that as an Bengal Thailand and cooking water, and it’s the same unlikely scenario, however, leaves river where the buffalo and the eleresearchers like Dr. Dean with the need phants bathe,” Dr. Dean explains. to eradicate the disease with scientific Cambodia “TheyAndaman live in really close quarters with methods. pigpens, buffalo “There has been no infectious Sea pens and chickens running around, all these animals… if disease on the planet that has ever been not in the house, then right in the front eliminated by antimicrobial treatment,” South yard. The women use their hands to says Dr. Dean of the current practice of China press dung around the patio to make it treating trachoma patients with antibiSea nice and smooth, and the women are otics. She and her colleagues are pubthe ones who cook the food. You can lishing the first hard data to prove that really see how the eye-hand-eye transChlamydia trachomatis persists in spite Malaysia mission can happen.” of antibiotic treatment. While trachoma used to be endemic “It’s not an issue of antibiotic resistin the Americas as well, the socioance,” Dr. Dean explains, which occurs economic changes that correspond with when an organism is unaffected by treatfirst-world development have virtually Indonesia ment with antibiotics. Instead, the issue with Chlamydia trachomatis is one of latency, in which the organism goes into a non-replicating, or latent, stage. As Dr. Dean explains, “an organism may be completely susceptible to every antibiotic that it would normally be susceptible to, but if the organism isn’t replicating, it won’t be killed.” s HANDS-ON SCIENCE: Deborah Dean, MD, MPH, swabbing the conjuctiva of a Nepali villager. Subsequently, effective treatment requires the prevention of the initial infection, which is why Dr. Dean has been actively working on a vaccine for chlamydial STDs. If the vaccine is successful, it will allow her to then go after the trachoma strains. “The STD vaccine may affect all chlamydial strains,” she says. “It may end up being one vaccine, we just don’t know yet.” Evidence suggests that to trigger an effective autoimmune response against Chlamydia trachomatis both antibody response and T-cell memory must be stimulated (B cells produce antibodies; T cells regulate B cells). Therefore, Dr. Dean and her colleagues hope to be able to produce a two-fold result from inoculation with their vaccine: to stimulate antibodies and T-cell memory of having seen the trachoma pathogen before. In spite of the challenges that this complex parasite poses, Dr. Dean has plenty of motivation. “The Nepali people are really special,” she says. “They care a lot about other people. They really want to do good for one another. We’re not like that. In our society, we’re brought up to respect each other and be nice to each other, but in Nepal, they’re brought up to help people.” Perhaps that is why Dr. Dean has always felt so at home there. Since her first introduction to Nepal, her commitment to helping the Nepali people has never waned. With her continued research, Dr. Dean may one day be able to return to her second home with a vaccine to eradicate the disease. # 22 CHILDREN’S HANDPRINTS Honoring Decades of Support On Sunday, March 14, hundreds of friends and donors visited the hospital for the Walk of Honor grand opening celebration. Located in the renovated entry plaza and newly built Emergency Department waiting area, the Walk of Honor features colorful displays, bricks, tiles, pencil-path lights, a dedicated flag pole and an animated plasma screen recognizing thousands of supporters spanning nearly a century. The celebration was an opportunity for benefactors to see their names prominently displayed, proudly depicting their partnership with Children’s Hospital & Research Center at Oakland. Additionally, it was a chance for Children’s to show off its new critical care facilities and new hospital entry—known as the Western Expansion—and to personally thank those who have contributed to advancing pediatric care at Children’s. The Walk of Honor can be found throughout the hospital’s main campus on Fifty Second Street in Oakland, across the street in its Outpatient Center atrium, and at the Research Center on Martin Luther King, Jr. Way in Oakland. With the input of hospital pediatricians, medical-care providers, members of the board of directors and those from the community, Children’s Hospital & Research Center Foundation created a variety of colorful, engaging and educational venues to recognize donor generosity. hospital visitors. One of the most striking new elements depicting the community’s generous and creative spirit is a tile mosaic. The mosaic wall features ceramic tiles hand-made by local artist Ruth O’Day with the help of Children’s Artists-in-Residence Sarah Barrow and Kyle McDonald, patients and community volunteers. This Children’s Circle of Care members, Alden and Barbara McElrath, descendents of the family whose carriage special exhibit is underwritten house became the Baby Hospital in 1912 and the site by The Art For Life of the current hospital. Foundation, a private foundation dedicated to funding the the Charlotte Rose Coleman Frey hospital’s Artist-in-Residence Program. Ambassador’s Desk, named in memory of Just inside, the new Welcome Pavilion a special 14-year-old by her parents and is named in honor of one of the hospital’s grandparents. This generous family also most committed donors, the East Bay established the Pediatric Intensive Care Neonatology Foundation established by Fellowship Endowment in Charlotte’s physicians who have dedicated their promemory, which will fund a fessional lives to our newborn patients. critical care fellowship in perpetuity. # Families arriving at the Emergency Building Blocks Campaign Supporters The new entry plaza is decorated with five brightly colored “pencil-lights,” which are each dedicated. A named hospital flagpole and hundreds of bricks and pavers inscribed with personal messages welcome Legacy of Children’s Care: Donors who have remem- w alk of honor w w w. c h o f o u n d a t i o n . o rg Department are greeted at Find your name in the Walk of Honor Annual donors and those who have created a legacy for Children's Hospital are included in the Walk of Honor. Currently, gifts made in 2002 are included. Gifts made in 2003 will be listed this summer. How to find your name: Emergency Department waiting area. Miracle Makers: Donors of $100 to $999 annually may find their names prominently featured in an animated presentation located in the new main entry. Life Benefactors: Donors who have contributed businesses, organizations, community groups and Children’s Hospital Branches for their ongoing dedication to raising support through special events. $100,000 or more in their lifetime are featured on a dramatic photographic mural by world-famous environmental artist Stephen Joseph. bered Children’s Hospital in their wills and trusts or created endowments, along with members of Children’s Circle of Care, special supporters who give $10,000 or more annually, are featured in a display that photographically captures Northern California. Chairman’s Circle: Contributors of $1,000 or more annually are recognized in the Miracle Makers “Machine” – an upright pinball machine underwritten by Children’s Hospital Branches—located in the Event sponsors: The “Mirrored City” recognizes Building Block Donors: Supporters who dedicated bricks, pavers, and stars have left their mark for future generations to see. The Art for Life Foundation generously underwrote the exterior 80-foot tile mosaic, created by patients and community members. For more information about the Children's Walk of Honor, please contact Jim Armstrong at 510-428-3885 ext. 5394 or via [email protected]. SPRING 2004 Grateful Families Invite You to a Springtime Gala “I am delighted to be a supporter of Children’s Hospital. Giving back is my way to express gratitude for the outstanding care my children receive here,” says Terri Phelps, whose daughter had brain surgery at Children’s last year. As her way of saying thank you, Terri has helped to establish the Grateful Grateful Family Committee member Jeff Haney (right), his daughter Jordana, and Cole Paulson at the Walk of Honor celebration. Families Program, a group of volunteer parents and grandparents interested in giving back by raising funds for the hospital. The group’s first major undertaking is the Residential Pacific Mortgage Springtime Gala on May 22 at the Oakwood Athletic Club in Lafayette. “We’ve got a very dedicated and diverse committee, and it feels good to be able to involve the community in something so near and dear to our hearts,” says grateful parent Renee Christensen, Children’s Hospital & Research Center Foundation trustee and retired Bay Area regional marketing manager for Costco Wholesale. Gala highlights include a raffle drawing for a one-week stay for six people on the luxury cruise ship, The World of ResidenSea. One lucky winner and five guests can choose to travel Europe in the summer, the Greek Islands in the fall, the Seychelles in the winter, or another exotic location based on availability. Additionally, the gala boasts delectable food, Big Band music, unique auction items, and an award celebration to honor nominated hospital staff members for their outstanding commitment to children. “It’s reassuring to know that we have a hospital like this in our community, where the value of investing in children is understood,” says Terri. “We invite you to join us in saying ‘thank you!’” At the gala, Grateful Families will present Thank You Awards to the following Children’s Hospital staff, in recognition of their outstanding contributions to the care of our children: Ardath Brandley, RN, Martin Chin, DDS, Sue Ditmyer, RN, PNP, Sandy Donato, Mary Beth Felice, MS, Bernice Gotelli, PBVM, Pam Koch, RN, Peter Sun, MD, Bryant Toth, MD, and Adina Vargas. Tickets for the Residential Pacific Mortgage Springtime Gala are $50 each. Raffle tickets are $50 each and only 500 will be sold. To purchase tickets or for more information on the Grateful Families Program contact Dave Tureaud at 510428-3885, ext. 4085. The Residential Pacific Mortgage Springtime Gala at Oakwood has been generously underwritten by: Residential Pacific Mortgage, Oakwood Athletic Club, Diablo Magazine, Quivira Estate Vineyards and Winery, Grace Street Catering, Best Beverage Catering, MAI Industries General Contractor, and Clay and Jody Davis. # KFRC Radiothon Raises $405,000 in Pledges! 23 KFRC listeners who pledged their support! Thanks to all of you, and most importantly, KFRC 99.7 for its partnership. # Events of Hope Recently, two community volunteer On-air personalities (l-r) Cammy Blackstone, Mike Krupicka, Sue Hall and Dean Goss during the KFRC Radiothon for Kids. groups hosted glamorous events to raise money and awareness for regional HIV/AIDS programs, including the Hope Clinic at Children’s. Richmond-Ermet AIDS Foundation donated $13,500 as a result of its Help is on the Way for the Holidays Cabaret. The Academy of Friends have committed $40,000, raised at its Hollywood to Bollywood Academy Awards Gala in February. These events enable the Hope Clinic to reduce the incidence of mother-to-child HIV transmission and improve the health and well-being of children at risk of infection. # It took four days, 500 volunteers, 100 grateful families and many hospital staff sharing their personal stories and anecdotes; the dedication and commitment of the KFRC 99.7 team; and thousands of To learn more about giving opportunities at Children’s Hospital, please contact Children’s Hospital & Research Center Foundation at 510-428-3814 or visit www.chofoundation.org. 24 CHILDREN’S HANDPRINTS Commitment, a Trust by Cynt Long-time Branches create a legacy that will carry on her to Children’s Like many parents, Orvie Pamp can date the milestones in her life by how old her children were when the event occurred. Thinking back to the very beginning of her association with Children’s Hospital & Research Center at Oakland, she recalls, “My son Gregory was about a year and a half. I had heard about Children’s Hospital Branches from a friend, and wound up joining Teak Branch.” How long ago was that? “Well, he’s about to turn 34,” smiles Orvie. “So it’s been a lifetime!” Long-term commitment came naturally to Orvie, who grew up in a family that had a strong ethic of helping others, especially children. “My father was a Shriner who could not stand to see a child in need,” she explains. “He passed that on. I was raised to do whatever I could to help.” As a young mother with two little boys, Orvie, a resident of Oakland’s Claremont Pines district, was deeply impressed by how the Branches demonstrated what women working together could achieve for their community. “Here was a hospital founded by a group of women. The Branches were there right from the start in 1912. I was proud to be a part of a group that had accomplished so much,” Orvie says. “Alice Bullard, president of the Branches when I joined, told stories about the ‘old days,’ when members did anything and everything that was needed by the hospital, from serving as nurses’ aides during World War II to taking shifts as waitresses in the hospital café, in addition to raising money.” Over the past three decades, Orvie’s service to Children’s has w w w. l e g a c y f o rc h i l d re n s c a re . o rg evolved as her life changed. She served four terms on the Branches’ board of directors and, yes, waited on tables at the hospital years ago. She chaired the Rubber Ducky Derby twice, and was a leader in the Miracle Balloons campaigns. After losing her eldest son, Mitchell, to an accident at age 15, Orvie became even more dedicated to Children’s. “I wanted to do all I could to make sure that other parents would not have to go through what we did,” she states quietly. Today, Orvie is a member-at-large of the Branches board. Together with her husband, Gerry Pamp, Orvie took her commitment to Children’s Hospital & Research Center at Oakland to another level in 2003, with the sale of a piece of rental property the family owned in Oakland. Gerry, a retired real estate investor, and Orvie knew that the sale could result in a significant capital gains tax bite. Exploring tax-saving strategies, the Pamps attended a seminar sponsored by the Children’s Hospital & Research Center Foundation and learned about how both they, and the hospital, could benefit through creating a charitable remainder trust—a very appealing option for a family with a long-standing commitment to supporting pediatric healthcare. The Pamps created their trust, transferred their property into it, and then sold the property. They did not pay any capital gains tax on the sale, and were able to take a sizeable charitable donation deduction on their 2003 income tax return. The proceeds of sale were reinvested in an income-producing SPRING 2004 and a Legacy thia Romanov leader and her husband r service for years to come. diversified portfolio, and Orvie and Gerry will receive payments from this income for the rest of their lives. When they are gone, whatever remains in the trust will go to the hospital, and their estate will pay no taxes on the assets in the trust. “Gerry and I saw giving to the hospital (through the charitable remainder trust) as a very good way to benefit through saving on taxes,” Orvie says. “The Pamps made a very generous and visionary gift,” says Emily De Falla, Vice President for Trust Services and Legacy Planning at Children’s Hospital & Research Center Foundation. “It is a perfect match of a life-long philanthropic interest with family financial benefit. Through their charitable remainder trust, the Pamp family has created a legacy that will expand and continue Orvie’s history of service to Children’s Hospital Oakland for many years to come. We are very grateful.” Orvie and Gerry protest that they are not unusually generous. “I just tell our friends that we found a wonderful way to help the hospital while helping ourselves,” Orvie says, adding, “I’m glad we had the opportunity to do this.” # 25 HOW A CHARITABLE REMAINDER TRUST WORKS A charitable remainder trust (CRT) is perhaps one of the most intelligent investment and estate planning strategies available today, enabling investors to: • Avoid capital gains taxes on the sale of appreciated assets; • Receive an income stream or designate income to a loved one; • Diversify investment portfolios; • Receive a charitable income tax deduction; • Reduce estate taxes; and • Support worthy causes. A CRT is a wonderful solution for those who wish to sell highly appreciated assets such as stock, a family business or investment real estate without paying capital gains taxes, and convert those assets into an income source. Before selling a highly appreciated asset, an individual transfers it to a charitable remainder trust. The trustee, who is usually the original owner, sells the asset at full market value and is not required to pay capital gains taxes. The trustee reinvests the proceeds of the sale in assets that produce income. Then the designated income beneficiaries (again, usually the original owner or the owner’s children) will receive lifetime income or a “payout” from the trust’s assets. Depending on whether a charitable remainder unitrust or a charitable remainder annuity trust is established, the income/payout received can be in the form of a fixed percentage of the trust’s assets valued annually (typically 6 to 8 percent) or a fixed payment. The original owners are entitled to a charitable income tax deduction the year they create the trust. The deduction is based on the fair market value of the asset, the payout percentage, the investor’s age(s) and the applicable federal rate. If they are unable to use the entire charitable deduction in the year of the transfer, it may be carried over for the next five years. At the end of the life of the last income beneficiary of the CRT, the trust assets are distributed to the designated charity, such as Children’s Hospital & Research Center Foundation. The remaining trust assets may also be used to create an endowment fund at that charity, thus establishing a meaningful legacy for the investor’s causes of choice. As an additional bonus, the original owner pays no estate taxes on the CRT assets that are transferred to charity at the end of the trust term. For more information on charitable remainder trusts, call Emily De Falla at 510-428-3362. THIS IS NOT LEGAL ADVICE. ANY PROSPECTIVE DONOR SHOULD SEEK THE ADVICE OF A QUALIFIED LEGAL, ESTATE AND/OR TAX PROFESSIONAL TO DETERMINE THE CONSEQUENCES OF HIS/HER GIFT. # 26 CHILDREN’S HANDPRINTS Old Friends, New Neighbors Oakland specialists at home in Marin County By Cyril Manning In many ways, those who physician who may have little 1100 Larkspur Landing Circle, Suite 150 live and work in Marin experience with rare childhood Larkspur, California County are fortunate. After all, illnesses or sophisticated childAppointments: 866-854-0550 this is a place that spans from specific procedures. www.childrenshospitaloakland.org/Marin tidal flats on the fog-swept “When a community is coastline to the wooded slopes underserved by specialists, kids of Mt. Tamalpais, and is home can miss out on the great outan upscale, educated community. But in to redwoods and pines, grasslands and comes that are available,” says Dr. the past it has been underserved when monuments of exposed rock, wide-open Hoffinger. He points to a recent patient it comes to specialty medical care for ranch and dairy lands, and residential from Marin as an example, a 17-yearchildren. We are changing that.” suburbs known for their high incomes, old girl who suffered chronic ankle pain Dr. Hoffinger, along with colleagues political activity and good education. and repeated sprains. “It was apparent from Orthopaedics, Cardiology and But for too long, many Marin that she needed surgical ligament Psychiatry has served Marin for the last families requiring specialized pediatric reconstruction, but she had been told two years in advance of the new clinic’s medical care for their sick children have that such a procedure wouldn’t be opening. “Marin is fortunate to have had to leave their community to find an possible until she was done growing. many extraordinary pediatricians,” he expert. That’s no longer the case: That simply wasn’t true. I scheduled a says. “Children’s has already developed a Children’s Hospital & Research Center surgical procedure that is fairly standard great relationship with many, and at Oakland is officially opening the for a pediatric specialist, and we saved several area doctors have told me that doors of a new satellite specialty clinic her from several years of pain and they find everything about Oakland’s at Larkspur Landing, providing families limited activity.” system—from our transport team to from Marin County and surrounding The new clinic in Marin adds to our intensive care services—to be very areas with convenient access to worldChildren’s existing network of satellite easy to work with.” class experts in 12 specialty services (see locations, which was created to provide With 54,000 kids in the county, back cover). communities across the Bay Area with primary care doctors see plenty of “Until now, Marin County has been easy access to world-class care. To find a children who need advanced care and in a tough situation,” says Scott location near you or to make an follow-up. The scarcity of advanced Hoffinger, MD, one of two orthopaedic appointment, call 1-866-854-0550. # specialists creates a problem for parents, surgeons who provide who must choose between leaving the services at the Marin location. “This is community for care and seeing a w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg Kendra, Claudio an d Christiane receive enzyme replacemen t therapy transfusions in the day Hospital at Childrens in 2002. SPRING 2004 27 President and Chief Executive Officer Tony Paap Interim Senior Vice President and Chief Operations Officer David Bertauski Senior Vice President and Surgeon-in-Chief James Betts, MD Senior Vice President, External Relations until one day they read that BioMarin was preparing to test a treatment for MPS I. The trial’s lead investigator, Emil Kakkis, MD, PhD, asked the Costa family to send medical reports and requested a skin biopsy to confirm Claudio had MPS I. He didn’t; his correct diagnosis was MPS VI. “I was shocked and conflicted,” Sonia recounts. “We had studied and learned so much about MPS I, made so many contacts with people around the world, had finally seen a light at the end of the tunnel, and then we had to start from square one. At the same time Claudio had a ‘better’ illness than we had thought. He could live longer, his mind would be ‘normal.’” Almost two years later, Dr. Kakkis connected the Costa family with Paul Harmatz, MD, lead investigator of the MPS VI trial. At the start of Phase 2, Claudio was confined to a stroller (because of the disease, his 8-year-old body could fit in one). His joints were so stiff, he could hardly walk further than three feet. Breathing was hard; he had respiratory infections and pneumonias. He slept connected to a machine that helped ease his sleep apnea. The results of the 48-week-long Phase 2 study revealed that the kids’ endurance during walking had improved by an average of 139 percent or 211 meters. Two years into treatment, Claudio can now run. “Watching these kids’ health improve has been really exciting,” Dr. Harmatz says. “Common colds used to mean long hospital stays for them. But look at them now,” he adds, waving in the direction of Isabella. Isabella is one of about 40 patients enrolled in Phase 3 of the trial, now underway. Children’s Hospital remains the only U.S. site. Five other medical centers—in Brazil, England, France, Germany and Portugal— participate as well. Isabella’s family learned about the trial from Readers Digest. “When Isabella was first diagnosed, we were hopeless,” Karla remembers. “You know it is a rare condition (MPS VI occurs in one out of 250,000 births) but if your child has it, that’s irrelevant. All that matters is that your child is different, that your child may not live. So it was amazing to know that someone miles away is taking care of our child by looking for a cure for this disease.” After the completion of each trial, its participants have continued to receive the enzyme weekly. Some have returned to their countries of origin. Others, like Isabella’s family, are seeking ways to stay in the United States as a way of ensuring their children can receive treatment. About six months after Phase 3 ends this September, BioMarin will apply to the Food and Drug Administration for approval of Aryplase. “We’ve moved heaven and earth to get to here,” Karla says. “We left everything. We are away from home, away from family, but where we are is the best place for our child. Right now, I have the hope that Isabella is going to be with me for many, many years.” # Mary L. Dean Interim Senior Vice President & Medical Director Len Kutnik, MD Senior Vice President, Research Bertram Lubin, MD Senior Vice President and Chief Financial Officer Terry Rosenthal Vice President, Legal & Risk Management Marva Furmidge Vice President, Ancillary & Support Services James Jackson Vice President & Chief Information Officer Don Livsey Vice President, Nursing Nancy Shibata, RN Vice President, Human Resources Greg Souza Children’s Hospital & Research Center at Oakland Board of Directors Harold Davis, Chair Pamela Cocks, Vice Chair Arthur D’Harlingue, MD, Vice Chair Robert C. Goshay, PhD, Vice Chair Barbara May, Vice Chair Edward Ahearn, MD Jeffrey Cheung Henry Gardner Donald Godbold, PhD Howard Gruber, MD Scott Hoffinger, MD Howard Jackson Watson M. Laetsch, PhD Alden McElrath Masud Mehran Linda Murphy Betty Jo Olson Tony Paap Howard Pien Mary Rutherford, MD Peter Sheaff, MD Harold C. Warner, PhD Story requests, comments or suggestions for Children’s Handprints may be e-mailed directly to Vanya Rainova ([email protected]), or sent to 665 Fifty Third Street, Oakland, CA 94609. people you trust caring for children you love Elizabeth Gleghorn, MD Gastroenterology Herb Scheirer, MD Psychiatry Alison Matsunaga, MD Hematology/ Oncology Howard Rosenfeld, MD Cardiology James Betts, MD Pediatric Surgery & Urology Susan Conrad, MD Endocrinology Joseph Torkildson, MD Hematology/ Oncology Scott Hoffinger, MD Orthopaedics Marilyn Butler, MD Pediatric Surgery Our pediatric specialists now serving you at Larkspur Landing. Working hand-in-hand with community pediatricians, we’re providing comprehensive specialty services at our new convenient location. Visit our new pediatric specialty clinic located at: 1100 Larkspur Landing Circle, Suite 150 Larkspur, California Phone: 866-854-0550 www.childrenshospitaloakland.org/Marin Our pediatric specialists in Marin: Howard Rosenfeld, MD Cardiology Peter Sun, MD Neurosurgery Karen Amorde-Spalding, MS, RD Clinical Nutrition Scott Hoffinger, MD Monica Kogan, MD Orthopaedics Susan Conrad, MD Endocrinology Elizabeth Gleghorn, MD Gastroenterology Caroline Hastings, MD Alison Matsunaga, MD Joseph Torkildson, MD Hematology/Oncology Suzanne Davis, MD Sheila Jenkins, MD Neurology James Betts, MD Pediatric Surgery & Urology Marilyn Butler, MD Pediatric Surgery Stephen Daane, MD John Griffin, MD Plastic Surgery Herbert Schreier, MD Psychiatry Non-Profit Org. U.S. Postage PAID Oakland, CA Permit No. 3 747 Fifty Second Street Oakland, CA 94609-1809