Handprints - Fall 2002 - Children`s Hospital Oakland
Transcription
Handprints - Fall 2002 - Children`s Hospital Oakland
HandPrints 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 Special Pullout Section on th Children’s 90 Birthday! inside: fall 2002 first ten days PAGE 5 ICN STAFF SAVES A LIFE family care PAGE 6 GAINING A SECOND FAMILY AT CHILDREN’S who’s for kids, who’s just kidding BUDGET WOES THREATEN CHILDREN’S CARE PAGE 27 2 CHILDREN’S HANDPRINTS calendar events OF SEPTEMBER 13 “What’s Up Doc?” luncheon table of contents 5 featuring Renee Wachtel, MD, director of Developmental & Behavioral Pediatrics, CHORI, 510-428-3360 19 Macy’s Passport Fashion Show and dinner, benefiting Children’s Pediatric HIV/AIDS Program and others, Fort Mason, San Francisco 20 Children’s Hospital 90th birth- 3 4 HEALTH FACTS 5 IN THEIR OWN WORDS The First Ten Days Macey spent the first 10 days of her life at Children’s. It was a time her mother will never forget, and Macey will never remember, but it changed the lives of both of them. 6 6 day celebration, 510-428-3367 Ruby Hill Golf Club, Pleasanton, 510-428-3128 ner and celebration, 510-428-3362 19 Rowan Branch Gala Des 9 22 Just Kidding” children’s health summit, 510-428-3367 24 22 DECEMBER 2 Richmond/Ermet AIDS CHILDREN’S HOSPITAL & RESEARCH CENTER FOUNDATION Donors Nurture a Family Tradition of Philanthropy Gift Annuities In a market filled with uncertainties, a gift that guarantees payment for life. Party, Oakland Airport Hilton, Oakland, 510-521-2049 4-13 ASID (American Society for CHILDREN’S HOSPITAL FOUNDATION Building Blocks to Honor Loved Ones Join us as we build the hospital of the future and pay tribute to loved ones. 24 “Who’s For Kids and Who’s Foundation “Help is on the Way For the Holidays” benefit concert and gala, Palace of Fine Arts, San Francisco, 415-931-0317 SPECIAL EDITION 90th Birthday Scrapbook Nine decades in pictures and clips. Pediatrics and Children’s Hospitals: 2,000 Years 9 Enfants, Blackhawk Museum, Danville, 925-937-9638 NOVEMBER 8 Tea & Tax Tips, 510-428-3362 20 Garden Branch Annual Holiday LEAD FEATURE Family Care For the Rexhepi family, the end of one perilous journey marked the beginning of another. This time, their “second family” at Children’s helped them face the challenges. 30 Score Fore Kids Golf Classic, OCTOBER 17 Legacy for Children’s Care din- DEAR READER Letter from the President 27 ADVOCATING FOR KIDS Who’s for Kids and Who’s Just Kidding Proposed solutions to budget woes threaten children’s access to health care. 27 Interior Designers) At Home for the Holidays showcase exhibit benefiting the Center for Child Protection. Mon.–Fri., 9:30 a.m.– 4:00 p.m., San Francisco Design District, 415-626-2743 7 Third Annual Oakland Tribune Holiday Parade, Broadway, Oakland, 510-428-3128 21 Hill Branch Annual Winter Ball, Fairmont Hotel, San Francisco, 510-654-5125 or 510-547-5309 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 FA L L 2 0 0 2 dear reader: When we opened our doors 90 years ago, the image of pediatric healthcare was quite different from what we see today. The specialty of pediatrics wasn’t very widespread, and the idea of a hospital dedicated solely to the care of children was new to the Bay Area. Doctors and nurses worked in starched white uniforms; today, healthcare providers wear colorful scrubs or sturdy “civilian” clothes so they can easily get down to kids’ level for comfort and care. The most eminent threat to children’s health in 1912 (see Pediatrics and Children’s Hospitals: 2,000 Years, page 18) is easily treated today, and community epidemics are now a thing of the past. Reviewing the remarkable achievements and successes of our first 90 years makes for a very pleasant stroll down memory lane, sometimes with amusing scenery—be sure to flip through our pull-out scrapbook with vintage photos of the way we were. But even as we take pride and pleasure in our accomplishments in the past, it’s important to keep our sights focused clearly on what we need to do in the future. Our mission, then and now, is to provide the high quality pediatric care that is the birthright of every child. Carrying that mission forward into the 21st century will mean planning, practices and business models that may be as different from what we knew in the past as today’s streamlined technology is from the clunky machinery of 1912. 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 Fifty Second Street, Oakland, CA 94609; Phone: 510-428-3000. Written, Designed and Produced by: Communications Dept. at Children’s Hospital & Research Center at Oakland 665 Fifty Third 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 Debbie Dare Graphic/Print Designer Susan Foxall Operations Manager Susan Martinez Media/Public Relations Manager Vanya Rainova Publications Manager Cynthia Romanov Editorial Content Manager Considering how we can successfully meet the needs of future generations of kids has been a particularly thoughtful task in the context of reviewing our past this birthday year. We can look to the foresight and integrity of our founding mothers who “got” the mission right so many years ago and renew our determination to continue to fulfill that mission while growing in response to community need. We have truly come a very long way. Please join us in these pages as we celebrate the past, bring you up to date on the present and envision the future. Best Wishes, Tony Paap President and CEO, Children’s Hospital & Research Center at Oakland Neile Shea Senior Web Designer Contributing Writer: Kim Goetzel 4 CHILDREN’S HANDPRINTS health facts * B L O O D D O N O R S I N S H O R T S U P P LY In 1975, neonatal-prenatal medicine became a board-certified subspecialty of pediatrics, and access to neonatal intensive care, once limited by the small number of institutions offering care and the few trained specialists available, became regionalized. This change had a significant impact on the well-being of newborns: In 1970, 20 infants died for each 1000 live births. By 1999, than number had slid to 7.1. (Center for Disease Control at www.cdc.gov) READ ABOUT NEONATAL INTENSIVE CARE IN THE FIRST TEN DAYS ON PAGE 5. An estimated 50 percent of all Americans will receive at least one blood transfusion at some point in their lives. An estimated 5 percent of Americans —more than 13 million people—have post-traumatic stress disorder (PTSD) at any given time. Studies have shown that as many as 100 percent of children who witness a parental homicide or sexual assault develop PTSD. Similarly, 90 percent of sexually abused children, 77 percent of children exposed to a school shooting and 35 percent of urban youth exposed to community violence develop PTSD. (National Center for PTSD at www.ncptsd.org) READ ABOUT TRAUMA AND PTSD IN HEALING—BEYOND THE BANDAID ON PAGE 6. Blood donors must be 17 years or older, weigh no less than 110 lbs. and enjoy general good health. To donate, call 1-800-GIVE-LIFE or log on to BeADonor.com to schedule an appointment.★ * * * * * The first recorded direct acknowledgement of the psychological and physiological differences of children and the specialized care children require appeared in literature in 10 A.D. The first children’s hospital was founded almost nine centuries later. READ ABOUT THE HISTORY OF PEDIATRICS IN PEDIATRICS AND CHILDREN’S HOSPITALS: 2,000 YEARS ON PAGE 18. 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 However, only 5 percent donate blood to the American Red Cross nationally, and an even lower 3 percent are donors in the Bay Area. The combined effect of low donor response and increased blood demand has Northern California experiencing a dramatic blood supply shortage that can barely meet the region’s needs for two days. The Northern California region needs to collect 9600 pints of blood every month to meet the local needs of patients in the 42 Northern California hospitals where patients being treated for accidents, routine surgeries and serious diseases such as cancer depend on donated blood. Ideally, the Red Cross aims for five to seven days worth of blood supply, three times as much as is currently available. If the shortage persists, it will affect the ability of area hospitals to respond to traumas, and may lead to the cancellation of some elective surgeries. M E D I C A I D F U N D I N G C U T S T H R E AT E N C H I L D R E N ’ S A C C E S S T O H E A LT H C A R E Almost a third of California’s children are enrolled in Medicaid. Although children make up more than half of California’s Medicaid population, the state spends only 25 percent of Medicaid funds on children. Each Medicaid-eligible child costs California just $1,118, on average, compared to the average cost per adult Medicaid enrollee of $4,027. Between 1994 and 1999, pediatricians and pediatric specialists provided 51 percent of all office visits to children on Medicaid. Unfortunately, low reimbursement rates place an unfair burden not only on pediatricians, but also on children and their families. Committed to serving all children regardless of ability to pay, children’s hospitals provide 40 percent of all inpatient hospital care for children on Medicaid. But state Medicaid payments to children’s hospitals are already low, covering only 69 to 80 percent of what it actually costs to provide care. An estimated 1.7 million California children—more than 1 in 6—are uninsured. If Medicaid funding is cut, that number will grow dramatically. (National Association of Children’s Hospitals and Research Institutions at www.nachri.org) Read about the challenges to providing health care to all California children in WHO’S FOR KIDS AND WHO’S JUST KIDDING on page 27. ★ By far the nation’s largest public provider of children’s health insurance, Medicaid is a critical healthcare safety net for millions of low-income children. FA L L 2 0 0 2 The First Ten Days I WA S D U E JUNE 23, 1999. My husband Jon and I had decided to do it all: we attended Lamaze, baby CPR, parenting and sibling classes; we managed healthy diets and never smoked or drank; we walked daily; we went to counseling sessions on how to best integrate our growing family. At my appointment with the obstetrician on June 16 everything appeared to be perfect and status quo, including my swollen Fred Flintstone feet. No open cervix, no dilation. I got a goodnatured warning: “This may take a while.” Over that weekend I waited. On Monday I woke up feeling crummy, and as the day went on, I felt worse. I called my obstetrician, who said, “If you feel unsure, come in. It never hurts to check.” We headed to the hospital, where I was admitted and hooked up to monitors. Within 15 minutes the nurse came in to prepare me for a C-section because my baby’s heart beat kept cutting off the 5 both hemorrhaged. Macey got the worst of it. She had aspirated blood into both lungs and had monitor. In the OR I heard the doctors pulmonary hypertension, blood in her say this was really serious. It had been stomach and a heart murmur. Her right three minutes since the baby’s last heart lung collapsed, then the left. She needed beat. Suddenly, everything we had three blood transfusions. No one knew worked so hard to perfect was in grave why it had happened; it was one of those danger. things that happen to one in…oh, who I remember hearing Macey’s weak cares how many women! The possibility first cry. Was that right? of losing our daughter haunted There was so much hustle me. IN THEIR and bustle going on. Then I couldn’t see Macey for five they brought her to me in an days; I had to recover, too. I WORDS incubator with tubes and called Children’s every day. The wires everywhere. “She’s nurses didn’t mind that I bawled BY K I M being transported to my eyes out with every conversaGOETZEL Children’s Hospital tion. They were always happy to Oakland,” the pediatrician talk with me and told me I said. “There’s nothing else we can do for could call as often as I wanted. Those her here.” Confused and upset, I said touch-and-go days with only a phone good-bye to my newborn daughter. connection were difficult, and the nurses Jon followed Macey to Children’s. He understood. They gave my husband a was told my placenta had detached from the uterine wall and the baby and I had [ C O N T I N U E D O N PA G E 2 6 ] Own 6 CHILDREN’S HANDPRINTS Family 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 FA L L 2 0 0 2 7 Care Three years ago, the Rexhepi family fled the perils of war to find asylum in the United States. Their journey from Kosovo ended in Oakland, where they faced another odyssey marked by fear and uncertainty. This time, they had help from their “second On a sunny Saturday morning, thousands of miles and many months away from the horrors of war, 6-year-old Vjollca Rexhepi nestles beside her father, Rabit. Her mom, Mexhide, cradles 1-yearold Doruntina, who was born in the United States. Her older brother Dardan, age 9, is engrossed in Pokemon. In the domestic comfort of their Oakland home, it is hard to imagine this family’s life in a refugee camp, where they shared a tent with as many as 58 people and possessed nothing but two blankets—one for each child. But the Rexhepis will never forget. The grim conditions of the refugee camp were an improvement over what they had faced at home, where Rabit and Mexhide feared for their children’s lives. “Armed [Serbian] soldiers beat my nephew. He was 5 years old. The soldiers threatened his mother with sexual abuse, but she had some money, which she gave them, and they let her go,” Rabit says. “We left to protect our children.” Their journey to the United States was arduous. Five days after their arrival, Vjollca, then 3 years old, started to limp. Her ability to walk rapidly deteriorated, and she lost control over her muscles. “All of a sudden she couldn’t walk, she refused to eat, she just cried all day. I had to carry her around. I was so scared,” Mexhide recalls. [ C O N T I N U E D O N PA G E 8 ] Photo by Vanya Rainova family” at Children’s Hospital Oakland. H A P P Y F A M I LY Dardan, Doruntina and Vjollca in front of their Oakland home. 8 CHILDREN’S HANDPRINTS [ C O N T I N U E D F R O M PA G E 7 ] They sought help at the local community clinic. The family spoke no English, interpreters were not always available, and Mexhide barely understood what she was being told. At first, doctors assumed Vjollca was just exhausted by the long journey from Albania. Then they suggested her symptoms might be psychological in origin, the result of a conversion disorder related to the trauma the little girl had experienced. “I went there for five days in a row, and they kept telling me that I should give her time and she will be okay,” Mexhide remembers. “But how could I just sit home and wait? My child had stopped walking all of a sudden. I was going crazy listening to her cry all day, not knowing what was wrong.” She persisted until she got a referral for her daughter at Children’s Hospital Oakland. Children’s pediatricians immediately diagnosed Vjollca’s illness: Guillain-Barré syndrome. A rare disorder affecting only 1 in 1000 people, its first symptoms include weakness or tingling in the legs. Rapidly worsening muscle weakness follows, sometimes spreading to the upper limbs and sometimes resulting in paralysis. It can strike at any age. Its cause is not known. At Children’s Hospital Oakland, Gena Lewis, MD, and rehabilitation physician Elaine Pico, MD, cared for Vjollca—and her family—during the acute phase of the illness and through six months of rehabilitation treatment. “I will never forget Dr. Lewis and Dr. Pico,” Mexhide says. It wasn’t just the successful treatment of their daughter’s illness that touched the family, although full recovery from a disease that turns its victims from healthy to helpless in a matter of days is cause for celebration. Rabit and Mexhide also treasure the 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 staff ’s patient, persistent and painstaking attempts to overcome the language barrier and ensure that the parents could participate in their daughter’s care even when an Albanian medical interpreter wasn’t available. Mexhide reports that nurses took the time to teach her English. Their caregivers offered to take them grocery shopping. Dr. Lewis told them they could contact her at any hour and never failed to return their pages. The Ruxhepis spent their first Thanksgiving with Dr. Pico’s family. Rabit notes, “You know, doctors are often close to the patient. But to be so close to the family, to do what they did for us, they had to be special.” “I had no friends in this country but my doctors,” Mexhide adds. The relationships endured. She still calls them just to say hello and ask how they are doing. And they, in turn, continue to look out for the family. When Dardan, who had been sociable and outgoing, became anxious, shy and withdrawn, Dr. Lewis referred him to Children’s Psychiatry department and psychologist Judith Libow, PhD. “A child like Dardan could have easily been ‘missed,’” Dr. Libow points out. “In many ways he is what some people perceive as the ideal child: quiet, cooperative, doesn’t stand out as a problem kid.” But his behavior had changed. Dardan suffered from nightmares and chest pain and often stayed in the periphery of groups of children. Dr. Libow identified Dardan’s symptoms as typical of post-traumatic stress disorder (PTSD), a consequence of experiencing or witnessing life-threatening events. An estimated 30 percent of adults who have spent time in a war zone suffer from PTSD, [ C O N T I N U E D O N PA G E 2 1 ] 90b i r t hd ay! Oakland l a t i p s o c eleb H s ’ rate s n e r its ih ld C FA L L 2 0 0 2 th Children’s Scrapbook View Children’s history in pictures and paper clippings! Read about the history of pediatrics! 9 10 CHILDREN’S HANDPRINTS 1912 Oakland Tribune 1920 1920 1910 1928 New Children’s building on 51st and Grove streets FA L L 2 0 0 2 11 1912 Original Baby Hospital 1910-29 1910-19: Population: 92,407,000 • Life expectancy: male, 48.4; female, 51.8 • Average salary: $750/year • Union membership: 2.1 million, strikes 1,204 • Movie attendence: 30 million/week • Divorce: 1/1000 • Vacation: 12-day cruise $60.00 • Whiskey: $3.50/gallon • Milk: $0.32/ gallon • Speeds make automobile safety an issue. 1920-39: Population: 106,521,537 • Life expectancy: male, 53.6; female, 54 • Average salary: $1236/year; teacher's salary: $970/year • 343,000 in military (down from 1,172,601 in 1919) • Dow Jones high 100, low 67 • Illiteracy rate reaches a new low of 6% of the population • It took 13 days to reach California from New York • There were 387,000 miles of paved road. en’s ildr Ch ital Oakland celeb Hosp ra t e s t s i 1913 ! y a b i r t hd th Annual report 1912 Cracker Jack toys first appear in boxes 1922 Annual report 1929 Children’s X-Ray machine 12 1940 CHILDREN’S HANDPRINTS Children’s surgery room 1940 Children’s weight room 1940 1937- 25th Anniversary book Annnual report 1940 Children’s lobby 1949 1930-49 1930-39: Population: 123,188,000 • Life expectancy: male, 58.1; female, 61.6 • Average salary: $1,368/year • Huey Long proposes a guaranteed annual income of $2,500 • Milk: $0.14/quart • Bread: $0.09/loaf • Round steak: $0.42/pound. 1940-49: Population: 132,122,000 • Life expectancy: male, 60.8; female, 68.2 • Average salary $1,299/year • National debt $43 billion • Minimum wage $0.43/hour • 55% of U.S. homes have indoor plumbing • Supreme Court affirms blacks have a right to vote • World War II changes the order of world power, the United States and the USSR became super powers • Cold War begins. en’s ildr Ch 1930 ital Oakland celeb Hosp ra t e s t s i ! y a b i r t hd th 1941 Children’s heat lamp 1940 1941 Children’s iron lung 1945 The Bambino FA L L 2 0 0 2 1962 13 Children’s founder, Miss Bertha Wright and Mrs. Everett Bertillion–an active Branches member– at an annual meeting 1958 Oakland Tribune 1968 Children’s volunteers 1950-69 1950-59: Population: 149,1888,000 • Life expectancy: male, 65.6; female, 71.1 • Average salary: $2,992/year • Average car sales: 6,665,800 • Bread: $0.14/loaf • Bomb shelter plans, such as the government pamphlet “You Can Survive,” become widely available. 1960-69: Population: 177,830,000 • Life expectancy: male, 66.6, female, 73.1 • Average salary $4,743/year • Minimum wage $1.00/hour • An estimated 850,000 “war baby” freshmen enter college; emergency living quarters are set up in dorm lounges, hotels and trailer camps. en’s ildr Ch ital Oakland celeb Hosp ra t e s t s i ! y a b i r t hd th 1960 1958 Oakland Tribune 1958 Oakland Tribune 14 CHILDREN’S HANDPRINTS 1970 Children’s volunteer 1970-89 1970-79: Population: 204,879,000 • Life expectancy: male, 67.1; female, 74.8 • Average salary: $7,564/year • Milk: $0.33/quart • Bread: $0.24/loaf • Round steak: $1.30/pound. 1980-89: Population: 226,546,000 • Life expectancy: male, 69.9; female, 77.6 • Average salary: $15,757/year • Minimum wage: $3.10/hour • BMW cost: $12,000; Mercedes 280 E cost: $14,800 • Movie attendance: 20 million/week • In 1989, Americans gave $115,000,000,000 to charity. en’s ildr Ch ital Oakland celeb Hosp ra t e s t s i ! y a b i r t hd th 1970 1987 The Bambino 1987 Children’s Family House opens 1970 1994 Construction of the Outpatient Center begins FA L L 2 0 0 2 15 2002 Oakland Tribune 2002 Groundbreaking for the Western Expansion 1990 1990present 1990-99: Population: 281,421,906 (2000 Census) • Life expectancy: male 73.1; female 79.1 (1997) • Average salary: $27,274.80/year (1999) • Teacher’s salary: $39,347 (1998) • Minimum wage: $5.15/hour (1997) en’s ildr Ch ital Oakland celeb Hosp ra t e s t s i ! y a b i r t hd th 2002 Renovation of the Outpatient Center atrium is completed 2002 Children’s publishes the premiere issue of HandPrints 2002 Dedication of the Nutritional Genomics Center at CHORI 16 CHILDREN’S HANDPRINTS en’s ildr Ch ital Oakland celeb Hosp ra t e s t s i ! y a b i r t hd th H I S T O R Y O F P E D I AT R I C S Pediatrics and Children’s Hospitals: 2,000 Years poo poo chair The French were first, when two hundred years ago a Parisian foundling home was transformed into L’Hopital des Enfants Malades, the world’s first hospital just for kids. The English followed about 50 years later with London’s Hospital for Sick Children. An American delegation visited and returned to the United States to found the country’s first pediatric hospital, Children’s Hospital of Philadelphia, in 1855. Considering that the special health needs of children were first acknowledged nearly 2,000 years before, these institutions were a long time coming. The ancients walker baby helmet While the father of medicine did not write specifically about pediatrics, Hippocrates (470-410 B.C.) did describe clinical phenomena that are well known to pediatricians today: • “Of children, those that be by nature well nourished suck milk not in proportion to their fleshiness • Gross feeders that draw milk do not gain flesh in proportion • With ulcers on the tonsils the presence of a sort of spider-web is not favorable • Not all who are convulsed whilst about teeth, die; many come through it safely.” Modern pediatricians will recognize in the first two maxims the irondeficient “milk baby,” and the third as a symptom of diphtheria. In the last, Hippocrates blames teething for seizures, a misconception handed down through the centuries. (The enduring myth of teething as the source of mysterious maladies echoes throughout history. As late as 1919, more than 1,600 deaths in England were attributed to teething, and some modern parents still believe teething causes illness.) The eight-volume De Medicina, completed about 10 A.D., states: “Children require to be treated entirely differently from adults.” This observation—so obvious today—is probably the first recorded direct acknowledgement of the psychological and physiological differences of children. It would be another 900 years before the world would see a text devoted to pediatric medicine, coming from China and predating Western pediatric treatises by more than 500 years. 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 FA L L 2 0 0 2 17 H I S T O R Y O F P E D I AT R I C S Dark Ages Europe’s Dark Ages yielded no significant scientific insight. Little was expected in this life, particularly in childhood, but there is evidence that the death of a child was regarded as a great loss, even in times of plague when rates of infant and child mortality were high. The era’s scant pediatric literature relied on derivative works and translations of writing from other times and cultures. Manuscripts of Islamic sages— grounded in Greek, Roman, Byzantine, Chinese and Indian medicine— found their way to the intellectual wasteland of Europe and were translated into Latin. Baby steps By the end of the 15th century, nearly every European city had hospitals and foundling homes where sick, abandoned or plague-displaced children could find shelter. Western pediatric manuscripts first appeared at this time, including four medical treatises on children’s psychology and pathology. Collectively referred to as the “Pediatric Incunabula,” they cover topics ranging from common childhood illnesses to childrearing advice that has stood the test of time: “It should be known that children should not be too severely punished…Punishment is to be praised when it is just and not too severe and a small fault in a child may be overlooked to prevent some greater one…Children who have reached six years should be sent to a teacher to be taught. They should not be kept at it continually but have recess.” The understanding of medicine in general and pediatrics in particular flourished during the intellectual fervor of the 16th and 17th centuries. Thomas Phaer published the “Boke of Children” (1544) devoted exclusively to children’s diseases, including such entries as “quynsye or swellying of throte, brustynge [hernia], pyssyng in bedde, small pockes and measles, fevers, wormes, and stoppying of the bellye.” But eighteenth-century medicine was still helpless against the cyclical eruptions of devastating epidemics—smallpox, measles, whooping cough, diphtheria, scarlet fever, mumps and cholera—that took the lives of thousands of children. During the smallpox epidemic of 1721, inoculation, long practiced in the East, was finally introduced in the American colonies. age The front p of of a volume ic the “Pediatr Incunabula” Front page of Thomas Phaer’ “Boke of Child s ren” (1544) 18 CHILDREN’S HANDPRINTS en’s ildr Ch ital Oakland celeb Hosp ra t e s t s i ! y a b i r t hd th H I S T O R Y O F P E D I AT R I C S Modern medicine Louis Pasteu r y Dr. Spock's “Bab first ” e, ar C and Child , published in 1946 of e bl was the bi e parents during th at th baby boom followed World War II. 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 Pediatrics as a separate field of study became widely recognized and accepted in the 19th century, with those who treated children exclusively called “pediatrists.” Historians locate the advent of modern medicine as the application of the germ theory in the last decade of the 19th century. Louis Pasteur—a scientist, not a clinician—discovered treatments for anthrax, then rabies. Medicine changed more rapidly in the century following Pasteur’s discoveries than in any other equivalent period in history. Community-decimating epidemics of infectious diseases mostly vanished in the West, and international efforts drastically reduced their occurrence worldwide. Mass immunizations for children resulted in enormous progress against many once-common deadly diseases. Smallpox had been around since the sixth century; as of May 1980, it was eradicated globally. Diphtheria afflicted 207,000 people in the United States at its peak in 1921; in 1983, there were only five cases. In the early 1950s, polio struck nearly 60,000 people a year in the U.S. alone; in 1994, the Western hemisphere was certified poliovirus-free. Improved hygienic measures reduced the prevalence of serious noncontagious illnesses. When the Baby Hospital—now Children’s Hospital & Research Center at Oakland—was founded in 1912, diarrhea was the leading cause of death in young children. Contaminated cow’s milk was often the culprit, but with refrigeration, pasteurization and increased medical understanding about the importance of keeping body fluids balanced, fewer children died. Later, drugs such as penicillin, cortisone and broad-spectrum antibiotics redefined pediatric illness. As the danger from acute disease receded, attention turned to chronic diseases and conditions. Today, trauma, not illness, is the country’s leading cause of child and infant mortality. More children die from injuries than from the next nine leading causes of death combined, including birth defects, cancer, heart disease, pneumonia and meningitis. Pediatrics today Today, pediatricians face a multitude of medical challenges and psychosocial problems in the patient population. Pediatric specialists must focus on the prevention and treatment of modern ills such as AIDS/HIV, child abuse, drug and alcohol abuse, venereal diseases, adolescent pregnancy, and violence in schools and on the streets as well as medical disciplines. Children’s Hospital & Research Center at Oakland provides clinical expertise in 30 specialties, from adolescent medicine to urology, and leads research in immunology, hematology and other fields that affect the quality of kids’ lives worldwide. FA L L 2 0 0 2 19 H I S T O R Y O F P E D I AT R I C S Along with the dramatic technological advances in pediatric medicine, profound changes have evolved in the philosophy of care. Until well into the second half of the 20th century, families were forbidden to see their hospitalized children outside of strict visiting hours. Now parents or guardians are encouraged to stay with their children around the clock when possible, making for calmer and happier patients—and families. At Children’s Hospital Oakland, kids are more involved in their own treatment than even 10 years ago, as with chronic pain patients using a self-controlled analgesic pump, resulting in less pain, less pain medication and a sense of self-determination for the child. Same-day surgery for procedures such as tonsillectomy or hernia repair disrupts family life much less than overnight hospitalization. And today, children and their families are provided support services such as the hospital school program, child life specialists and social workers. 55 Visitor pass, 19 ICU NAME:_____ __________ A basic right endangered __________ DATE:__ __ But these remarkable advances in pediatric healthcare /__ __/__ __ demonstrate a jarring dichotomy. While basic and clinical pediatric research, as well as overall scientific advances, have captured public imagination and expanded the horizon of CHILDREN possibilities, finances and socioeconomics threaten access to ’S HOSPIT DO NOT PL AL OAKLA ACE ON LE ND ATHER OR even day-to-day healthcare for many children in the United SILK FABR IC States. Physicians, policymakers, parents and children face a Visitor pass to troubling paradox: when academic, scientific and technological advances day have made so much possible, what is available remains inaccessible to thousands of children. It’s the responsibility of those who care about kids—and the future—to make sure this paradox is resolved and quality specialized healthcare, the legacy of history’s giant strides in pediatrics, is available to every child. 20 CHILDREN’S HANDPRINTS 90b i r t hd ay! ital Oakland c p s o eleb H s ’ rate s n e r its ih ld C th It has been—and will continue to be—our privilege and our passion to offer the best of care to all children. Many thanks to all who have supported us throughout the years. 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 FA L L 2 0 0 2 Guillain-Barré (Ghee-yan Bah- 21 [ C O N T I N U E D F R O M PA G E 8 ] ray) syndrome, also called acute inflammatory demyelinating polyneuropathy and Landry's ascending paralysis, is an inflammatory disorder of the peripheral nerves—those outside the brain and spinal cord. It is characterized by the rapid onset of weakness and, often, paralysis of the legs, arms, breathing muscles and face. Although many cases are mild, some patients are virtually paralyzed. Breathing muscles may be so weakened that a machine is required to keep the patient alive. Many patients require intensive care during the early course of their illness. Although most people recover, the length of the illness is unpredictable and often months of hospitalization are required. The majority of patients eventually return to a normal or near-normal lifestyle, but many endure a protracted recovery and some remain wheelchair-bound indefinitely. The cause of GBS is not known. Some cases occur shortly after a microbial (viral or bacterial) infection such as a sore throat or diarrhea. Some theories suggest an autoimmune mechanism, in which the patient's defense system of antibodies and white blood cells is triggered into damaging the nerve covering or insulation, leading to weakness and abnormal sensation. and the numbers may be An estimated 30 percent of reports that he is higher in children. feeling better. The adults who have spent time in nightmares have Dardan had seen the effects of violence on mostly disapa war zone suffer from PTSD, family and friends. He peared, he says, and the numbers may be had faced soldiers who and his heart were ready to kill, and he higher in children. never races like it had been detained with used to before. He his mother and sister while his father tells his parents that he loves “going to see disappeared into the neutral zone at the his doctors.” So does Vjollca, who fully Macedonian border. His little sister—his recovered from her illness. inseparable companion—had been seriously “It’s incredible, but true,” Rabit says. ill and disabled. Now he was re-living what “My children are joyous when they go to he and his family had witnessed and the hospital.” ★ endured. During Dardan’s weekly play therapy sessions with Dr. Libow, she tries to help him engage in expressive play. “He is more comfortable with structured, regulated games, which is a sign of trying to contain and control his emotions,” Dr. Libow explains. “He’s very non-competitive and concerned about my feelings. When we play board games, for example, he goes out of his way to make sure I win, too,” she says. “It is just one more way in which he tries to take care of those around him. Dardan has become more relaxed in recent weeks. He laughs at jokes and often smiles. He can speak directly about the stresses of adjusting to a new culture and learning a new language at school. He 22 CHILDREN’S HANDPRINTS We may outgrow playing with colorful plastic building blocks, but even as adults we retain the desire to build something meaningful. Join us as we build the hospital of the future: a welcoming child-friendly place where all kids can receive the special care they need. By late 2003, visitors to Children’s Hospital & Research Center at Oakland will enter the hospital through a beautiful plaza leading to a welcoming and colorful reception pavilion. The new family-friendly look is part of the Western Expansion that is enhancing the hospital’s critical care services, which are vital to the wellbeing of our children. The vibrant entry will feature bricks and ceramic tiles that Children’s Hospital friends, staff and volunteers can purchase to pay tribute to—and memorialize—loved ones or commemorate a special occasion. Twelve-inch ceramic stars—with your special Artist impression: Kai-Yee Woo & Associates Building Blocks to Honor Loved Ones Plaza floor with pavers and bricks message—will fit into a colorful tile mosaic created by our young patients through the Art for Life Artist in Residence program, and will decorate the plaza. Smaller ceramic tiles will border a similar mosaic display in the Emergency Department waiting area. Sponsorship opportunities also include 12-inch square bricks and corner pavers that will cover the plaza floor to welcome guests. Both the bricks and the pavers can be custom engraved. For more information on how to leave a legacy for Northern California’s children and become a part of Children’s Hospital & Research Center at Oakland by sponsoring a personalized tile, brick or paver, visit us online at www.chofoundation.org or call Jim Armstrong, Children’s Hospital Foundation vice president at 510-428-3885 ext. 5394. ★ Ceramic Stars Corner Paver Plaza Brick To learn more about giving opportunities at Children’s Hospital, please contact Children’s Hospital Foundation at 510-428-3814 or visit www.chofoundation.org. Holiday Cards That Care Did you ever wonder who lived in the little white house wrapped by Children’s Hospital Oakland’s parking garage and Outpatient Center? The house belonged to Lawrence (Larry) Bossola, who lived there from the time it was built in 1934. On Aug. 10, 2001, he passed away. Larry, a life-long North Oakland resident, watched the hospital grow and develop. With Children’s expanding around his house, Larry remained a friend of the hospital and served as its honorary ambassador. Recently, Larry’s godson and friend, Al Gavello, made a $25,000 gift to Children’s in Larry’s memory. As a child, Al was treated here, and he knew how much his friend loved Children’s. “The hospital was like Larry’s home. I hope his memory will live on.” We will remember Larry and are grateful for the generosity of friends like Al. ★ Every year hundreds of children from throughout the Bay Area show their support for the kids we treat by entering colorful winter-inspired artwork into the Children’s Hospital Oakland Holiday Art Contest. After 9-year-old Adriana, who was diagnosed with leukemia, received a bone marrow transplant here in July 2001, she and some friends from her San Francisco Bay Girl Scout Troop decided to enter the contest with their paintings of surfing snowmen. Contest judges were impressed with their creativity, and their artwork was chosen as one of 12 holiday cards in the Children’s Hospital Oakland holiday card collection. Proceeds from holiday card sales go right back into helping the hospital care for other kids just like Adriana. Adriana, her friends and her mom are happy to be able to give back to the hospital that made Adriana’s cure and recovery possible. Adriana’s card, along with the full collection, is available for purchase in packs of 12 or in larger corporate orders at www.kidsholidaycards.org or by calling 510-428-3814. Custom imprinting is available. ★ IN A FRIEND’S HONOR Al Gavello (right) with James Jackson, director, Environment of Care. Close to 300 friends and supporters joined Children’s Hospital Oakland Research Institute senior scientists Bruce Ames, PhD, and Giovanna Ferro-Luzzi Ames, PhD, for the grand opening celebration of the landmark Nutrition Genomics Center. Funded by generous grants from the Ames Family Foundation, the new center is dedicated to studying nutrition’s effect on metabolism, aging, obesity, and the prevention of cancer and genetic diseases. The hospital community is grateful for good friends and benefactors like the Ameses. Holiday card Photo courtesy of Children’s Hospital Foundation Giving in Memory of Larry Bossola 23 Photo courtesy of Peg Supinski FA L L 2 0 0 2 The Second Annual KBLX For Kids Radiothon was a huge success, raising $220,000 in pledges! Morning show host Kevin Brown’s live broadcast from the hospital brought together patients, families, caregivers, volunteers and donors. Change Bandits like little Eric (above) donated loose change for a big return. A special thank you goes to our lead Radiothon sponsor, the Foresters, a non-profit financial services organization serving as international title sponsor of the Children’s Miracle Network Radiothon program. CHILDREN’S HANDPRINTS Photo by Vanya Rainova 24 spends less than 10 cents for every dollar raised. We know our money goes to the care of kids, not for solicitation of funds.” Bill graduated from Stanford with a degree in economics. He worked with The Clorox Company in Oakland, retiring as executive vice president of corporate affairs, after 35 years of service, many as a member of the board of directors. Dottie, a University of Kansas graduate with a degree in business and a BILL AND DOTTIE TOWERS I N T H E I R F A M I LY H O M E I N M O R A G A , C A L I F. “What we want most for our children is to grow with a generosity of spirit.” Bill and Dottie Towers established an endowment fund to support Children’s Hospital and to inspire philanthropic behaviors in their children and grandchildren. Donors Nur ture a Family Tradition o & Research Center Foundation, selecting the hospital as one of two organizations to which they now make major contributions every year. The endowment is a permanent fund, annual income from which will be used for the greatest pediatric care needs of the hospital. “We were giving money to many charities, but not enough to make a dent in any of them,” Bill explains. “So we decided to make significant gifts to fewer organizations, and Children’s was our first choice.” Two reasons influenced their decision: the hospital’s indispensable role in the community and the financial profile of the foundation. “We’ve observed and experienced Children’s first-hand and were impressed with their work and the broad spectrum of population the hospital served; it was important to us that there was no discrimination in race, class or ethnicity,’ the Towers say. “But we were also impressed with the financial record of the foundation, which over the years minor in journalism, has worked as an editor and reporter for several Bay Area publications. The Towers have traveled extensively throughout the world, but their dearest wish remains modest. “What we want most is for our children and their families to grow with a generosity in spirit. We try to set as good an example as possible.” And they do. The value of Bill and Dottie’s gift extends beyond their support of Children’s: with it they offer a priceless gift to their family by teaching them the philosophy and culture of philanthropy. The Towers say they “just married,” but Photo couresy of XX Upon hearing the story of the family of Albanian refugees whose children, Vjollca and Dardan, received care at Children’s Hospital & Research Center at Oakland (see Family Care on page 6), Bill and Dottie Towers pronounced it “definitely more worthy of the pages of HandPrints” than their story. But the two stories are intertwined: Vjollca’s care and treatment alone cost close to $87,000. The family’s Medicaid insurance covered some of the expense, and Children’s absorbed the rest. It is the philanthropic spirit and generosity of people like Bill and Dottie— and their family—that ensure our ability to provide excellent care to all children today, and in the future. The Towers’ story is just as important as the Rexhepis’. Bill and Dottie have supported Children’s Hospital Oakland—along with many other local non-profit organizations —for many years. But recently, they established The William M. and Dorothy Wise Towers Endowment at Children’s Hospital FA L L 2 0 0 2 indeed that was 27 years ago. Between the two of them, Bill and Dottie have six children, 21 grandchildren and eight great grandchildren. On holidays, instead of receiving presents from their family, Bill and Dottie ask them to contribute to their endowment at the foundation. “We have given generously to our children, and they want to give back to us. But we really don’t need anything, and what we need, we buy,” the Towers say. “So we thought the endowment would be a nice outlet for them, and some have really gotten into the whole act.” Last year, the endowment received additional gifts from their children and grandchildren. The youngest Towers to contribute is just 5 years old, and he donated $50 dollars from his piggybank. The tradition of philanthropy has certainly caught on in the Towers family through their endowment fund. ★ f Philanthropy 25 In a market filled with uncertainties, a gift that guarantees payments for life In these financially uncertain times, wouldn’t it be wonderful to receive guaranteed payments for life in exchange for a charitable gift? That’s the way a Children’s Hospital & Research Center Foundation gift annuity works. Not only will you have the satisfaction of helping children get the best medical care, you will also receive an annuity backed by all the assets of this charity. For older donors, the annuity rates are often substantially higher than the returns on CDs, money market funds, stocks and bonds. Here are sample rates currently in effect: Single Person Married Couple AGE RATE AGE RATE 65 70 75 80 85 6.7% 7.2% 7.9% 8.9% 10.4% 65/65 70/70 75/75 80/80 85/85 6.3% 6.6% 7.0% 7.0% 8.7% Example: Ethel Smith, 85 years old, has common stock in a company that pays her a dividend of 2 percent per year. Ethel’s $10,000 worth of stock provides her with a quarterly check of only $50—a total of $200 a year. Ethel can transfer this stock to the foundation in exchange for a gift annuity. With a rate of 10.4 percent, she will receive $260 each quarter or $1,040 each year. She will also enjoy a charitable income tax deduction of $4,848 (based on the August 2002 applicable federal rate). In addition to guaranteed payments, a gift annuity provides other benefits, including: • A significant charitable tax deduction • Payments that are partially tax-free • An annuity rate often higher than the interest paid on current fixed investments • Capital gains tax savings when the donor is one of the annuitants • The satisfaction of helping restore children to good health A PA R T O F T H E T O W E R S F A M I LY G AT H E R E D A R O U N D T H E C H R I S T M A S T R E E On holidays, instead of receiving presents from their family, Bill and Dottie ask their children and grandchildren to make gifts to the “family endowment fund” at the foundation. Our gift annuity donors also become members of the Legacy for Children’s Care. These forward-thinking people are our partners in planning for the care of coming generations of children. Their gift annuities and other planned gifts ensure that vital resources are in the pipeline to help Children’s Hospital carry its mission into the future. In recognition of their foresight and generosity, the names of these donors are included in the new Legacy Memorial located in the atrium of the Outpatient Center and published in the annual Honor Roll of Donors. Donors are also invited to the annual Legacy Celebration, the Chairman’s Circle Dinner, What’s Up Doc? Luncheon and other invitation-only events throughout the year. Would you like to learn more about Children’s Hospital’s gift annuity program? Emily De Falla, Vice President of Children’s Hospital & Research Center Foundation, can provide a tailor-made illustration showing you exactly how a gift annuity can work for you. Please call 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 IN THEIR [ C O N T I N U E D F R O M PA G E 5 ] Own WORDS “first picture” of our daughter to deliver to me. How thoughtful of them to do something so simple that meant the world to me! On my first visit with her, Macey lay intubated. I remember seeing her heart race on the monitor and asking why. “She’s crying,” they told me, “but because she’s intubated, there’s no sound.” I watched the nurses take care of her, wanting so badly to hear the sound of her crying. Thinking about how we were going to afford all the medical expenses made me sick to my stomach. But a social worker, Darby Schouten, MSW, came to our rescue. “Don’t worry,” she told us, “whatever your insurance doesn’t cover and pital Macey’s nurse, Dotty Walczak, you cannot pay, Children’s Hospital will, RN, told me to stop crying because this so just focus on your daughter.” She set was a happy time, and it truly was. up a counselor to help us get through Children’s staff came to this tumultuous the rescue of our daughtime; she made lacter and family, yet they In 2001, Children's tation and “well never asked for anything health” appointHospital Oakland’s but for me to focus on ments for me. Intensive Care Nursery our daughter’s health. As the days Today, Macey is a passed, Macey cared for close to 600 happy and healthy 2made huge strides. year-old. We endure the newborns and infants. One by one, all the ups and downs of partubes, wires and enthood, but her crying ventilators were doesn’t bother me. Instead, it gives me a removed. On the 10th day, she received sense of peace and faith because hearing a clean bill of health, and we could head it means she’s healthy. home and be parents. As we left the hos- 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 R E U N I T E D Macey and ICN nurse Dotty Walczak, RN, having a womanto-woman chat at the 2002 Intensive Care Nursery Reunion. I often remember Dotty’s words before we drove away: “Kim, this is a time you’ll never forget and Macey will never remember,” she said. “So go home and enjoy your daughter.” I thank God and Children’s Hospital for that. ★ FA L L 2 0 0 2 Who’s For Kids and Who’s Just Kidding? You know things are not well when in the world’s wealthiest country more than 10 million children lack health coverage. But when federal and state officials try to patch the budget deficits by dipping into funds essential for providing care to all children, something’s gone terribly wrong. More than 50 percent of the children served by the nation’s pediatric facilities receive Medicaid, which reimburses, on average, 70 cents per dollar of actual cost of care. More and more of the remaining expense is absorbed by children’s hospitals which struggle to maintain the fragile balance between their commitment to delivering the best care to all children and the complex economic circumstances that threaten this mission. It’s never been an easy job, but recent unprecedented state and federal budget cuts have placed our most vulnerable citizens— and the institutions that serve them—at great risk. Consider the facts: • The federal government allots disproportionate share hospital (DSH) funding to states to be distributed to eligible hospitals such as Children’s Hospital & Research Center at Oakland. Since 1998, federal DSH funding to children’s hospitals has been reduced by $40 million, and more cuts are slated for next year. • In addition, Secretary of Health and Human Services Tommy Thompson has slashed the Upper Payment Limit (UPL) reimbursement to hospitals by 30 percent effective May 14. The UPL helps offset the low reimbursement rates provided by MediCal. California’s children’s hospitals could lose as much as $80 million per year as a result of this cut. • At the state level, fewer Californians will qualify for MediCal because the threshold income eligibility is being dropped from $15,000 per year to $9800 per year (at $4.71/hour, a rate well below even the minimum wage). 27 President & Chief Executive Officer Tony Paap • In addition, families will need to re-enroll for MediCal benefits several times a year instead of annually. This will generate an enormous amount of paperwork for hospitals and the state, which hopes that families will fail to sign up for benefits and thus be dropped from the system, “saving” money. • The state budget also rolls back physician reimbursement rates to 1982 levels—an entire generation ago. Consider the numbers: the average MediCal visit now reimbursed at $20 will drop to $16. The effect of this cut is that fewer physicians will be able to care for MediCal patients. • The state will “rake off ” an administrative fee of already-reduced federal DSH dollars intended to go to hospitals, to the tune of $55 million dollars (though the cost of administering the program statewide is only about $1 million). Senior Vice President, External Relations Mary L. Dean What is the potential impact of these combined cuts? Under the present circumstances Children’s Hospital Oakland is faced with a terrible choice. Continuing to provide all the services needed by the kids today puts at risk the hospital’s ability to provide even reduced services to the kids of the future. But, if Children’s cannot provide the care needed by all kids in our community, who will? From minor scrapes to major illnesses, Children’s meets the needs of more than 176,000 kids who visit the hospital annually. This number itself is impressive, but more important are the 176,000 stories of pain and hope, crisis and recovery, worry and compassion. Any of these children could be a child you know. For many of them, Children’s offers the only access to quality healthcare. We cannot, and must not, let these children fall through the cracks. There is only one reason for a child to be sent home from the hospital: because they are better. To shut the door on a helpless child during a time of crisis would be unconscionable. ★ Children’s Hospital & Research Center at Oakland Board of Directors Harold Davis, Chairman Pamela Cocks, Vice Chair Arthur D’Harlingue, MD, Vice Chair Robert C. Goshay, PhD, Vice Chair Edward Ahearn, MD William Byrne, MD Jeffrey Cheung Michael Duncheon, Esq. Legal Counsel Steven Feldman, MD Donald Godbold, PhD James Hanson, MD Seymour Harris, MD Irma Herrera Hyacinth Hewan Howard Jackson Watson M. Laetsch, PhD Barbara May Alden McElrath Masud Mehran Linda Murphy Betty Jo Olson Tony Paap Rudolph Peterson Harold C. Warner, PhD Chester Weseman, MD Steven Yedlin, MD For more information about how you can become an advocate for children, contact Mary L. Dean, Senior Vice President, External Relations at 510-428-3464. Senior Vice President & Medical Director William Byrne, MD Senior Vice President, Research Burt Lubin, MD Vice President, Patient Care Services Valerie Roberts, RN Vice President, Ancillary & Support Services James Jackson Vice President, Legal & Risk Management Marva Furmidge, Esq. Vice President, Chief Information Officer Don Livsey Interim Vice President & Chief Financial Officer Roger Roux Interim Senior Vice President & Chief Operations Officer Dave Bertauski 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. who's for kids and who's just kidding? On Oct. 24, 2002, Children’s Hospital & Research Center at Oakland will host a day-long summit on children’s health. Focusing on the relationship between health and education and the importance of community partnerships in maximizing the effect of available services, the summit will combine panel discussions with opportunities for participants to share ideas and insights, and develop a partnership vision and action plans for children’s health and well-being. For further information, please contact: Mary L. Dean, Senior Vice President, External Relations, at 510-428-3464. www.childrenshospitaloakland.org Non-Profit Org. U.S. Postage PAID Oakland, CA Permit No. 3 747 Fifty Second Street Oakland, CA 94609-1809