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St. Louis Children’s Hospital | 2009 Annual Report

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2 St. Louis Children’s Hospital 2009 Annual Report 1

“When I grow up…” It’s a phrase I’m sure we’ve all heard from a child at some point in our lives. Those words are often followed by aspirations such as “…a fireman,” “…a doctor,” “…a teacher” or “…an artist.”

A child’s mind knows no limits—he or she believes all things are possible. And that childlike optimism and wonder are what makes St. Louis Children’s Hospital such a transcendent place. It continually inspires us to do all we can to help kids grow up healthy and strong, so they can live the lives they dream about.

Thanks to your support, we are pleased to present the 2009 St. Louis Children’s Hospital Annual Report. This report is an overview of how we are providing the very best pediatric care through cutting-edge medicine, research, innovative programs and community outreach.

In partnership with our generous donors, skilled staff and physicians, and community supporters, we can continue to bring healthier, brighter futures to children and their families.

Dear Friend of St. Louis Children’s Hospital

Lee Fetter President

Robert R. Hermann Jr. 2009 Foundation Board Chair

Kelvin Westbrook 2009 Hospital Board Chair

15,500Number of

Admissions to St. Louis Children’s

Hospital in 2009

2009 Annual Report 3

The Hopes and Dreams photography project is a collaboration between St. Louis Children’s Hospital, Strauss Peyton and Ladue News. This beautiful series of images, envisioned by Colin Miller of Strauss Peyton, shows patients from St. Louis Children’s Hospital photographed in settings that reflect their aspirations for the future.

The boys and girls featured in these portraits are different ages and live in different places. Some have overcome their difficulties once and for all; others continue to face challenges. What they share in common is a strong will to persevere, and hopes and dreams for happy, fulfilling lives.

These images and stories debuted in the pages of Ladue News, were then displayed at businesses throughout St. Louis and will find their permanent home on display at the hospital. Miller hopes the portraits and stories will be comforting and inspiring

to families. “I’m just trying to give people a little hope,” he says. “They can look at these portraits and think, ‘I’m not alone.

Other families have been through this and are having their dreams come true. I can do it, too.’”

A special thank you to Bobbi and Colin Miller of Strauss Peyton, Publisher Lauren Rechan and to the writers from Ladue News.

The Hopes and Dreams Project

2009 ANNUAL REPORT

2 St. Louis Children’s Hospital

Frances, age 13Future Research Scientist

Frances was diagnosed at age 11

with a rare brain cancer. Fortunately,

it was caught at an early stage, and

her prognosis is excellent. She

dreams of becoming a researcher.

She says, “If I could work with

people who have cancer, I will

be able to tell them I know exactly

what they’re going though.”

“When I grow up…” patient stories featured in this publication are from the Hopes and Dreams project.


Mason first came to Children’s Hospital in June 2008, after his parents, Julie and Larry Byrom, received a call from his teacher at school. “The teacher said he didn’t look too well, and we later found out that when he fell asleep from his nap, he had almost stopped breathing completely,” says Julie.

Following an 11-day stay in intensive care, Mason spent the next two months in the hospital. Prior to his hospitalization, he had begun to show unusual symptoms.

“He was born healthy—no problems at all. Then at 3½ years old, he inexplicably started to gain weight.”

Julie and her husband took Mason to the doctor, but it wasn’t until his respiratory arrest in school that they eventually discovered what plagued him.

The diagnosis, Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood, or ROHHAD, is a rare, progressive disease that affects the brain’s ability to continue telling the body to breathe. There are only 35 to 40 known cases worldwide.

Despite the severity of the illness, his mother says Mason has adapted well to managing it.

“It’s not easy—he has a trach, and he needs to be hooked up to his ventilator every time he takes a nap or sleeps,” she says. “But he never complains. He considers it a part of his life.”

She also credits the staff at Children’s Hospital for sending her son on the road to recovery.

“They were great. Child life specialist Stacy Sedlack, in particular, went out of her way. She would always come to his room to see if he needed anything. Once he made cupcakes with her, and they walked around afterwards handing them out to the nurses,” she recalls. “Mason fell in love with the nurses, and they fell in love with him.”

Written by Trish Muyco-Tobin

“I want to bring joy to others.”

Mason, 5 | Future Chef

HOPES & DREAMS PROJECT



As part of the grant release, $985,373 was awarded to St. Louis Children’s Hospital.

The hospital’s advocacy and outreach department will use the funds to partner with Metropolitan Organizations Strengthening and Empowering Society (MOSES), a group of St. Louis churches that will mobilize a grassroots community-wide enrollment effort utilizing church-affiliated advocates. The hospital will also collaborate with other community groups that target teens, immigrants and the underserved.

“St. Louis Children’s Hospital is thrilled to receive this grant, which will enable our hospital, MOSES,

and our other community partners to help the children and families who need it most by enrolling them in these insurance programs,” says Lee Fetter, Children’s Hospital president.

These grants were awarded to applicants whose outreach,

enrollment and retention efforts will target

geographic areas with high rates

of eligible but uninsured children, particularly those with racial and

ethnic minority groups who are

uninsured at higher-than-average rates.

The grant awards require that recipients be able to show actual increases in enrollment and retention of children already in the programs.

Children’s Hospital Receives Nearly $1 Million Grant to Enroll Underinsured Children

HOSPITAL & COMMUNITY

814 individuals volunteered their time

throughout 2009, contributing

46,554 hours of service.

Volunteers make a tremendous impact

at St. Louis Children’s Hospital!

In October, the Department of Health and Human

Services announced $40 million in grants to

69 grantees in 41 states and the District of Columbia

to help them find and enroll children who are

uninsured but eligible for either Medicaid or the

Children’s Health Insurance Program (CHIP).

$985,373 was awarded to

St. Louis Children’s Hospital.

For 10 years, the Olson Family Garden has been providing patients and families with a peaceful place for reflection, solace and healing. Named for Bruce and Kim Olson, the garden is home to more than 7,000 plants and flowers.

In addition to a variety of places to sit and rest, including a swing, benches and small coves, children enjoy crafts, puppet shows, and performances by magicians and storytellers. Other features include waterfalls, winding paths and stepping-stones that take garden visitors from fountains to flower beds to ponds filled with goldfish and views of nearby Forest Park.

Bright and cheerful areas of the hospital, like the Olson Family Garden, contributed to Children’s Hospital receiving another honor in 2009.

A survey completed by Soliant Health named St. Louis Children’s Hospital one of the 20 Most Beautiful Hospitals in the United States.

Children’s Hospital was the only pediatric hospital to receive this ranking.

10 YearsOF HEALING


Camp Crescent 2009 Attendance:

37 campers,

16 counselors,

150 parents/family

at family night

For 10 years, Camp Crescent has provided a place where children who have sickle cell disease can have fun, and feel more confident in themselves and about living with sickle cell disease.

Camp Independence 2009 Attendance: 7-week

summer camp—averaged 16

campers per day

Camp Independence is a camp program from the Carol and Paul Hatfield Cerebral Palsy Sports and Rehabilitation Center at St. Louis Children’s Hospital. The sports program is designed to promote the integration of young people with cerebral palsy and related disabilities into sports activities.

Joint Adventures Camp 2009 Attendance: 48 campers,

2 junior counselors

This camp provides children with arthritis and other joint diseases the opportunity to experience a summer camp and learn how to better manage their disease.

Camp Hope 2009 Attendance: 30 families

Camp Hope is a summer camp for AIDS- and HIV-infected children and also provides families with a respite from the struggles of treating the diseases.

Camp Rhythm 2009 Attendance:

61 campers,

13 day campers

Camp Rhythm provides a unique,

medically safe overnight camp for

children with heart conditions. Campers enjoy

camp activities and education on heart conditions. Plus, it creates an environment where it is normal to be sick, be tired, have scars and take medications.

Stepping Stones Camp 2009 Attendance: 60 campers

Stepping Stones Camp is offered to children who are grieving the loss of a sibling, parent or grandparent. Stepping Stones offers fun activities such as swimming, nature activities, crafts and special activities designed to provide peer support while coping with feelings of loss.

SPECIAL CAMPS FOR SPECIAL CAMPERS St. Louis Children’s Hospital offers several special summer camps that are funded by St. Louis Children’s Hospital Foundation. Children’s Hospital volunteers were 105 strong and contributed

3,944 volunteer hours to the camp. These camps are uniquely designed and staffed to care for children’s special

medical needs, but also allow them to experience the activities and

fun of a traditional camp.

Last year, St. Louis Children’s Hospital provided $376,000 worth of charity care to eight international patients from countries that included South Africa, Kenya, Mongolia, Jamaica and El Salvador. These children were treated for illnesses ranging from heart conditions to complex neurological diseases. Unfortunately, these children did

not have access to medical care in their home countries.

Such is the story of a 4-year-old girl from Kenya who was diagnosed with a complex neuroendocrine tumor in her neck. The little girl’s mother had died, and her father left her to live at an orphanage. Fortunately, an American family living in Kenya

brought her to the United States, and she was able to receive medical care free of charge from Children’s Hospital.

St. Louis Children’s Hospital

spent $3.4 million on charity

care in 2009 and is proud

to provide medical care to

children locally, nationally and

internationally, regardless of

their families’ ability to pay.

TOUCH stands for “therapy of unique canine helpers.” The hospital’s TOUCH team is made up of sixteen dogs that are specially trained to provide comfort in a hospital setting.

Throughout the year, they visit with patients in several of the hospital’s outpatient clinics, as well as on the inpatient floors. But for one day each year, the entire team gathers in one place, allowing the children to party with the whole pack—

and even collect trading cards for each of the animals.

Pet therapy is one component of St. Louis Children’s Hospital’s Healing Arts program, which also includes art therapy, music therapy, humor therapy (the Clown Docs) and horticulture therapy.

The TOUCH dog program has grown to a record high, with 16 pet therapy dogs on board.

In 2009, these volunteers contributed 836 hours.

The TOUCH dogs and their volunteers provide a familiar distraction in an otherwise unfamiliar environment. Some would argue this type of alternative therapy speeds a child’s recovery emotionally, mentally and physically. Children’s Hospital has partnered with Support Dogs, Inc. to offer the TOUCH Dogs program since 1995.

Is There a TOUCH Dog in the House?Who says you need a lab coat to offer good medicine? Sometimes you just need a lab—Labrador

retriever, that is. Or a poodle, a Bernese mountain dog, a

Dalmatian or any of the various breeds that make

up the TOUCH dog program at St. Louis

Children’s Hospital.

International Charity Care




GOING GREENwith AmerenUE

Funded by generous donors, the van visits 13 local schools to help identify and treat children with asthma. It is also used to educate families and teachers about the disease.

Lisa Meadows, pediatric nurse practitioner and manager of the Healthy Kids Express Asthma Program, says nearly 20 percent of children in St. Louis are living with the disease.

“Asthma is the number one reason children visit the emergency room and the number one reason children miss school,” she says.

The purpose of the Healthy Kids Express Asthma program is to enroll diagnosed asthmatic children and monitor, educate and care for them.

By improving their self-management skills, these children have become less vulnerable to school absenteeism, and they have an improved quality of life. They sleep better at night and participate more in school, family, social and athletic activities.

The program covers all facets of asthma education, such as a coaching program for high-risk asthmatic children to assess

their home environment, evaluate asthma triggers, and educate the families on proper use of medications, equipment and health services.

Healthy Kids Express Asthma program nurses remain in contact with the child’s physicians, school nurses and parents to monitor absenteeism and progress, and then adjust the child’s asthma action plan as necessary.

Healthy Kids Express services are offered free of charge thanks to the generosity of donors.

783asthma action

plans written and prescribed

573physicals performed by the Healthy Kids

Express Team

1,210flu shots given

by the Healthy Kids Express Team

Joan Upperman, RN, BSN, nurse and community educator with the Healthy Kids Express Asthma Mobile Unit, holds Yanaiya Dunlap, 6, a kindergartner at Lucas Crossing Elementary Complex School. Behind them is the new Healthy Kids Express Asthma Mobile Unit.

A Breath of Fresh AirIt may look like just another RV on the road, but to more than 900 kids in St. Louis, it is a breath of fresh air and a lifesaver. Meet the newest addition to the St. Louis Children’s Hospital Healthy Kids Express fleet—the Healthy Kids Express Asthma Mobile Unit.


2,528parents contacted

directly by a member of the Healthy Kids

Express Asthma Team

941children enrolled

in the Healthy Kids Express

Asthma program

17,746children screened by

the Healthy Kids Express Mobile Unit

(screenings include vision, hearing, dental, scoliosis,

lead and asthma)

288teachers & staff educated by the

Healthy Kids Express Asthma Team

St. Louis Children’s Hospital will reduce its electricity usage by more than a million kilowatt-hours (kWh) per year, thanks to AmerenUE’s Business Energy Efficiency Program.

Through the program, AmerenUE is providing nearly $52,000 to the hospital to help cover the costs of installing new, high-efficiency lighting in its parking garage. The incentive funds will cover about 40 percent of the cost to install the new lighting.

Patients and visitors to Children’s Hospital will enjoy the new, two-lamp fluorescent fixtures that replace old, inefficient 175-watt metal halide lighting.

That’s a savings of more than half a million dollars in a decade—money that can be used toward services for children—and it’s equal to eliminating electricity usage in 74 average Missouri homes a year!


When Mackenzie was 4½ years old, she got her foot stuck in a tricycle on the first day of preschool. She continued to limp, even after X-rays of her ankle and knee showed nothing wrong. That fall, Mackenzie’s doctor recommended that she get her hip X-rayed, and it was then that the family got some answers. After a very long and emotional day, Mackenzie was diagnosed with Legg-Calvé-Perthes, a degenerative bone disease, in her left hip.

The family left the hospital that day with Mackenzie in a stroller and for the next four years, her feet didn’t touch the ground.

One month following her diagnosis, Mackenzie underwent a successful hip extension (tendon release) surgery at St. Louis Children’s Hospital. “She came out in a double leg, hot pink petrie cast, so her spread was wider than she was tall,” her dad, Scott, says. “She couldn’t even get through the elevators— we had to tilt her sideways!”

While at Children’s Hospital, Scott says Mackenzie’s family was hugely blessed to have come in contact with orthopedic surgeon Dr. Perry Schoenecker and his staff. Mackenzie stayed in a cast for eight weeks, and then switched to a leg brace. She also had to undergo hours and hours of physical therapy.

Mackenzie discovered her passion for fashion while recuperating. This summer, Mackenzie took her first sewing class, and now has her own sewing machine. During their visit to Washington University’s Sam Fox School of Design and Visual Arts for the Hopes and Dreams photo shoot, her mom says Mackenzie was elated.

“When she saw all the fabric and dress forms, she told me, ‘Mom, this is where I belong!’”

Written by Trish Muyco-Tobin

“I want to make others feel confident.”

Mackenzie, 10 | Future Fashion Designer




Twins have a lot in common, and Kenneth and Keenan Manning are no exception. Both are on the honor roll at school; both are crazy about sports. Unfortunately, they also share severe allergies and asthma. “Keenan developed asthma when he was 3, and was in and out of the hospital every year until he was 6; just last year, Kenneth was hospitalized,” recalls Mary, their mother.

It isn’t easy telling a couple of active, high-spirited, sports-loving boys that they can’t go out to play.

“But before their condition was under control, I always asked their teachers to keep them indoors during recess whenever there was a chill in the air, because I was afraid they’d have an asthma attack,” Mary says.

“I was scared all the time. Those boys used to look at me and say, ‘Mom, when can we go outside?’ It broke my heart. Then Dr. Anita Stiffelman, their pediatrician, told me, ‘Don’t limit those boys—we’ll face the challenges as they come.’”

Kenneth and Kennan’s older sister, Roxie, also faced health challenges. “She needed open-heart surgery the day after she was born,” Mary says. “But thanks to their amazing doctors and nurses, the kids pulled through, and they’re doing fine.”

‘Doing fine’ may be an understatement. “Both boys enjoy school—Kenneth likes reading and writing; Keenan likes math,” Mary says.

“My husband is confident that they’ll be the first twin pro basketball players!

“We don’t know what we would have done without Children’s Hospital. Now our kids can be kids, and they’re so happy and excited.”

Written by Tony DiMartino

“We want to hear the roar of the crowd.”

Kenneth and Keenan, 9 | Future Pro Athletes




MEDICAL & CLINICAL RESEARCH

Global Harvest Alliance

Though they share a common purpose, each institution brings unique strengths and world-class leadership to this global challenge.

The focus of the Alliance will be to create low-cost, nutritionally complete foods to prevent and treat all forms of undernutrition.

These foods will incorporate crops that are protein and micronutrient rich, disease and pest resistant, and that can be disseminated through smallholder farmers.

The GHA team is led by St. Louis Children’s Hospital emergency unit physician Mark Manary, M.D., a leader in the field of childhood malnutrition who is the Helene B. Roberson Professor of Pediatrics at Washington University School of Medicine; and a member of the Donald Danforth Plant Science Center.

Manary has a successful track record with such innovation; his peanut butter-based, ready-to-use therapeutic food (RUTF) for the

treatment of severe acute malnutrition has consistently resulted in 90 percent recovery rates.

Manary’s work extends beyond RUTF. In 2004, he began collaborating with the Danforth Plant Science Center to enhance staple crops so they can thrive where malnutrition is rampant, and provide a complete package of nutrients needed for health.

During the next five years, the Global Harvest Alliance and Danforth Center scientists will field-test enhanced varieties of the staple plant crop cassava in Kenya and Nigeria. It is anticipated that these improved varieties will be widely available in Africa within 10 years.

“St. Louis Children’s Hospital has a vibrant outreach mission supported by our many donors to expand our vision of ‘better health and better health care’ to the children of our community. This alliance gives new and important meaning to our capacity to extend ourselves beyond the region to a global community,” said Lee Fetter, St. Louis Children’s Hospital president.

A St. Louis-based team of plant and physician-scientists with a vision of eradicating malnutrition throughout the developing world announced the formation of the Global Harvest Alliance (GHA), a humanitarian effort involving St. Louis Children’s Hospital, The Donald Danforth Plant Science Center and Washington University School of Medicine.

The focus of the Alliance will be to create low-cost, nutritionally complete foods to prevent and treat all forms of undernutrition.

2009 Annual Report 1918 St. Louis Children’s Hospital

ST. LOUIS CHILDREN’S HOSPITAL

Research is growing in the area of pediatric surgery, thanks to the Children’s Surgical Sciences Institute (CSSI). CSSI research will lead to new treatments in major areas of children’s surgical care, including fetal repair, childhood cancer, trauma and pediatric gastroenterology.

Children’s Hospital has an opportunity to greatly advance its role in surgical research and innovation through the institute. CSSI’s physician leader is Brad W. Warner, surgeon-in-chief at St. Louis Children’s Hospital, Jessie L. Ternberg, MD, PhD, Distinguished Professor of Pediatric Surgery, and division director of pediatric surgery at Washington University School of

Medicine. He is a top pediatric surgeon and a widely published researcher.

Dr. Warner says, “This research is an opportunity to understand underlying congenital disorders so we can develop new surgical practices to better treat these

problems. Experienced doctors are working in

a leading-edge facility, creating new knowledge and seeking to improve the way we care for

children. These doctors are invested

in a specific disease, creating the likelihood of better outcomes for children based on research evidence. Research will benefit from the synergy of our ideas. Currently, there’s nothing like CSSI anywhere else in the United States.”

MEDICAL & CLINICAL RESEARCH

Launched in 2006, the Children’s Discovery Institute is a research partnership between St. Louis Children’s Hospital and Washington University School of Medicine. It aims to accelerate cures for childhood disease through four targeted centers:

• The McDonnell Pediatric Cancer Center

• The Center for Musculoskeletal and

Metabolic Disease

• The Center for Pediatric

Pulmonary Disease

• The Congenital Heart Disease Center.

Today, more than 44 investigators working within these research centers across 13 departments at Washington University are aimed at discovering the genetic roots of some of the most devastating children’s health problems.

These grants have brought about new collaborations between clinicians and basic researchers that will speed the translation of their discoveries from the bench to the bedside.

Awards from the Children’s Discovery Institute have resulted in significant progress in children’s health research. Awardees have used their funding to gather the scientific evidence they need to gain support for larger studies from the National Institutes of Health (NIH) and other national organizations.

“This review technology will allow us to systematically improve our techniques and approaches for pediatric patients,” says Jim Duncan, MD, PhD, interventional radiologist with St. Louis Children’s Hospital, associate professor of radiology at Washington University School of Medicine, and chief quality and safety officer for the Mallinckrodt Institute of Radiology.

“To our knowledge, this is the first installation of its kind in the country.”

The IR team performed more than 2,000 image-guided pediatric procedures in 2009, such as the placement of internal tubes, drainages and balloon inflations.

“Since we routinely use X-ray to guide our tools and monitor

Surgical Sciences Institute

These treatments will improve survival

rates and equip pediatric surgeons with better,

more sophisticated and less invasive

surgical techniques.

A new Interventional Radiology (IR) Suite at St. Louis Children’s Hospital not only offers the latest, most sophisticated technology designed for pediatric patients, but includes a recording system that allows physicians, nurses and radiology technologists to review these X-ray-guided procedures from start to finish.

progress during these procedures, we were looking for new ideas to achieve radiation reduction. While the newly installed equipment offered a substantially lower dose than before, we wanted to go even further,” remarks Dr. Duncan. “This system allows us to minimize dosage, which is especially important in children because the procedures are more difficult than in adults, and even small reductions can have dramatic benefits.

By reviewing these recordings

after the procedures are

completed, everyone on the team,

including nurses, technologists

and physicians, can learn what we

might do better in the future.”

Interventional Radiology Suite


When 15-year-old India Moore discovered a strange bump over her left eye, little did she or her parents know it would lead to a four-year medical nightmare that would include a one-in-a-million diagnosis, a 54-day stay at the hospital, a medically induced coma and an eventual kidney transplant.

“India’s disease was very difficult to diagnose because it’s so rare,” says her mother, Angela. “From the summer of 2005 until January 2007, we were told they didn’t know what was wrong. But one night she became severely swollen and began coughing up blood. We rushed her to the emergency room and were told to expect the worst. As soon as they were sure

she was stabilized, she was airlifted to St. Louis Children’s Hospital, where our ordeal really began,” says Angela.

India would spend most of the next two months as a patient at Children’s Hospital. “She was in the pediatric intensive care unit for two weeks, on dialysis, bleeding from her lungs—they didn’t know what was happening,” Angela says. Finally the relief of a diagnosis—Microscopic Polyangiitis (MPA), a rare autoimmune disease that can cause damage to the body’s organ systems.

“MPA usually affects middle-aged Caucasians, so

India is an unlikely sufferer,” her mom explains. “After a year and a half of

dialysis, India was the recipient of a successful kidney transplant in December of 2008. “We had to depend on the staff at Children’s Hospital during our family’s greatest hour of need and were never disappointed. This was difficult on our entire family, but I knew we were all in good hands,” says Angela.

India says her greatest comfort during her treatments at Children’s Hospital were the art therapy sessions. “I loved the art therapist, Julie Gant. It was so nice to be able to do something fun when so much other stuff was going on. I’ve loved drawing all my life, and it felt good to express myself,” she says.

Written by Meredith Boggess

“I want to capture the world’s beauty.”

India, 15 | Future Artist




And this gift will continue to provide a steadily increasing benefit for future generations of children and their families.

Even as a young man, Frank Ruf was preoccupied with the alleviation of suffering. While working as a drugstore clerk, he developed and patented a headache remedy that found a worldwide following, making him a millionaire. He invested his fortune in real estate in downtown St. Louis, and settled down to a comfortable life with his wife, Alpha H. Ruf.

When Frank Ruf died in 1923, he left his fortune in trust, giving his widow a generous income.

Upon Mrs. Ruf’s subsequent death, in 1938, the trust terminated and the details of her husband’s last will and testament were revealed, releasing the funds to more than a dozen charities. The largest of these gifts was a $1 million bequest to establish the permanent endowment known as the Frank A. Ruf and Alpha H. Ruf Endowment Fund for St. Louis Children’s Hospital.

The purpose of this fund was “…to provide perpetually for the free medical treatment and maintenance and support of poor children, irrespective of nationality or religion.”

The Rufs’ great love of children was reflected in their giving. Indeed, because it was endowed, the Ruf gift has been magnified and perpetuated, now generating hundreds of thousands of dollars each year. Although the couple never had children of their own, surviving generations and generations to come were

the intended heirs of their compassionate generosity.

Thousands of patients at St. Louis Children’s Hospital, from those

treated in the 1940s and 50s to those treated

in 2009, have been touched by Frank and Alpha Ruf’s gift. Some undoubtedly owe these donors

their very lives.

The Ruf Endowment is one of the reasons this is so. For a man preoccupied with the alleviation of suffering, Frank Ruf most certainly ensured a good and lasting use of the fruits of his labors.

THE ULTIMATE GIFT

The Legacy of Frank A. RufGIFT PLANNING

People still admire Frank Ruf, 87 years after

his death. Although he died many years ago,

the intentional method by which he provided

for sick children has kept his memory, and

his spirit, alive.

Frank Ruf’s endowed gift to St. Louis

Children’s Hospital, given thoughtfully,

perpetually and without fanfare in 1938, has

saved and enhanced the lives of thousands

of children over the ensuing decades.

Planned gifts to St. Louis Children's Hospital make a difference today and for future generations.

In its 131-year

history, St. Louis Children’s

Hospital has never turned

away a child based on

a family’s inability to pay

for services.

Planned gifts have played

a critical role in enabling

St. Louis Children’s Hospital to

become one of the nation’s leading

pediatric hospitals. Philanthropy is

a driving force in our work,

helping to ensure excellence in

patient care, community

outreach and research.


THE ULTIMATE GIFT

Established at St. Louis Children’s Hospital with gifts of $1.5 million or more

Dana Brown Chair in Emergency Medicine Dr. David Jaffe

Louis Larrick Ward Chair in Pediatric Cardiology Dr. George Van Hare

William McKim Marriott St. Louis Children’s Hospital Professor of Pediatrics Chair Dr. Jim Keating

Ruth L. Siteman Chair in Pediatrics, supporting efforts in Childhood Infectious Disease Dr. Greg Storch

Ferring Family Chair in Pediatric Cancer and Related Disorders Dr. Michael R. DeBaun

Other endowed chairs represented by physicians of St. Louis Children’s Hospital

Harriett Spoehrer Chair Dr. Alan Schwartz

Helene B. Roberson Professor of Pediatrics Dr. Mark Manary

Park J. White Professor of Pediatrics Dr. F. Sessions Cole

Shi Hui Huang Professor of Neurological Surgery Dr. T. S. Park

Melvin E. Carnahan Professor of Pediatrics Dr. Phil Tarr

James P. Keating, MD Professor of Pediatrics Dr. Aaron Hamvas

Donald Strominger Professor of Pediatrics Dr. Robert Strunk

Carol B. and Jerome T. Loeb Professor of Anesthesiology Dr. David Murray

Allen P. and Josephine B. Green Professor of Neurology Dr. Jeff Neil

A. Ernest and Jane G. Stein Associate Professor of Neurology Dr. Brad Schlaggar

Blanch F. Ittleson Professor of Psychiatry Dr. John Constantino

Dr. Joseph B. Kimbrough Chair for Pediatric Dentistry Dr. Alex A. Kane

Jessie L. Ternberg, MD, PhD, Distinguished Professor of Pediatric Surgery Dr. Brad Warner

1,381Number of Transport

team trips in 2009Endowed Chairs


Alison and John first became involved with the hospital through the annual St. Louis Children’s Hospital Day at Six Flags event. They have also supported several areas of the hospital, including The Hale Irwin Center for Pediatric Hematology/Oncology, the Olson Family Garden and the Care & Cures campaign.

The Ferrings are especially passionate about supporting Dr. Michael R. DeBaun’s research on sickle cell disease.

They established the Ferring Family Chair for Pediatric Cancer and Related Disorders, which is currently held by Dr. DeBaun.

Dr. DeBaun has established a nationally renowned program for treatment, education and research

into the complications of sickle cell disease.

The Ferrings were also instrumental in creating the Ferring Scholars Program,

directed by Dr. DeBaun. The in-depth,

rigorous program provides high school students who are interested in careers in health care or biomedical research with a three-year research experience guided by a faculty mentor.

Alison served on the Olson Family Garden planning committee, and played a key role in the design and creation of the garden.

John has served in a variety of leadership roles, including the Foundation Development Board, Foundation Board of Trustees, Leadership Giving Committee, and was a Pacesetter volunteer for the Care & Cures campaign.

John has also made an impact by introducing new donors and board members to the hospitals.

The Ferrings were one of the first Circle of Care members in 1996, and are charter members of the Transformational Leaders for Children donor group.

The Heart of Gold Award is the hospital’s most prestigious honor. Recipients demonstrate the highest level of philanthropy through gifts of both their time and resources.

Their generous hearts exemplify the values and beliefs of St. Louis Children’s Hospital with a deep and long-standing commitment to children.

Previous Recipients‘97 Harriet Spoehrer

‘98 Doris and Donald Schnuck

‘99 Dana Brown

‘00 John and Sylvia Londoff

‘01 Ollie and Mary Langenberg

‘02 Carol and Paul Hatfield

‘03 Hale and Sally Irwin

‘04 Corie and Lou Fusz

‘05 Jim and Libby McDonnell

‘06 Jan and Chuck Mueller

‘07 Anne and Doug Albrecht

‘08 The Saigh Foundation

Heart of Gold Award, 2009

Alison and John Ferring

The Heart of Gold Award is the hospital’s most prestigious

honor. Recipients demonstrate the highest level of

philanthropy through gifts of both their time and resources.

The 2009 Heart of Gold recipients are

Alison and John Ferring.


“I want to go after the green jacket.”Will was born May 3, 2000, and through normal newborn testing, he was diagnosed with a congenital heart defect called Tetralogy of Fallot. “It’s a pretty common heart defect,” says his mom, Maureen Sheehan.

“His doctors told us he would be fine, but he would need surgery to correct his condition.”

Maureen and her husband, John, brought their son home from the hospital after a typical newborn stay to allow time for growth before surgery. “That was good, of course, but also very stressful,” she recalls. “Every time he would cry, we worried that he would have a ‘tet spell’ (when a ‘tet baby’ turns blue and passes out), which thank God never happened.”

But as Will grew bigger, he became more critical. Although his doctors wanted to wait until he was 4 months old, he underwent open-heart surgery August 8 at St. Louis Children’s Hospital.

“The nursing care in the intensive care unit was incredibly compassionate and so amazingly dedicated,” Maureen remembers.

“Those nurses sit at the foot of the babies’ beds nonstop, not only taking care of them, but of the parents also – in a very nurturing and professional manner.”

For his first surgery, Will’s stay in the hospital lasted more than a week. By age 4, he had undergone multiple heart procedures and two open-heart surgeries, all at Children’s Hospital.

Today Will enjoys playing with his two brothers, his sister and his many friends. “He’s just a normal kid who likes to have fun,” his mom says. “He’s got a huge heart and a giving spirit.”

Written by Diane Alt

Will, 9 | Future Pro Golfer



Brandy Bourgeois remembers all the dates. April 28: the day her daughter, Sheyenne, was admitted to St. Louis Children’s Hospital with a diagnosis of kidney failure. July 17: the day Sheyenne switched to hemodialysis after several complications and ensuing hospitalizations caused by peritoneal dialysis. And September 26: the day Sheyenne had her transplant.

Now, a healthy second-grader, Sheyenne loves to play house, dress up in her mother’s high heels and play with Barbies and Polly Pockets, and watch wrestling. She especially loves to sing.

“She thinks Taylor Swift is awesome,” Brandy says.

When Sheyenne first got sick in April 2008, Brandy and her husband, David, thought it might be pneumonia. Sheyenne was “working really hard to breathe,” Brandy recalls, and was constantly thirsty. “It turned out her kidneys were failing,” says Brandy, who was eight months pregnant at the time. “I was so overwhelmed.”

The family learned that Sheyenne had been born with only one kidney, and it was still the size of a newborn baby’s—it had never grown.

Sheyenne was on dialysis for three weeks in the hospital then five months at home.

“It would hurt me when it was on, so I had them hold my

hand,” Sheyenne says. While on dialysis,

she went to Children’s Hospital for monthly visits, and more frequently when she started having problems with the catheter. Fortunately, the nurses were “awesome,” Brandy says.

“Sheyenne could not wait to go see the dialysis nurses; she loved them.”

As a result of all that has happened, Brandy says Sheyenne has become less shy and more boisterous. “She’s kind of a little princess. I think this experience has brought her out of her shell.”

Written by Jenny Fisher

“I want to entertain the world.”

Sheyenne, 7 | Future Singer




In June, St. Louis Children’s Hospital was named the State Lead Center for Missouri for the National Pediatric Acquired Brain Injury Plan (NPABI). The NPABI is a national network of 52 healthcare institutions that will work together to address the number one cause of death and disability for children and young adults in the United States – brain injury. The NPABI is being called one of the largest collaborative efforts in the history of pediatric medicine.

“Every day, eight children die as a consequence of traumatic brain injury, and four times as many children survive with significant disabilities that require long term rehabilitation,” says Jose Pineda, Director of the Pediatric Neurocritical Care Program at

St. Louis Children’s Hospital. “Much needs to be done to improve outcomes.”

As the State Lead Center, St. Louis Children’s Hospital will be responsible for developing the master plan of care for children/young adults with brain injuries in the entire state of Missouri.

St. Louis Children’s Hospital’s leadership role in The National Pediatric Acquired Brain Injury Plan will benefit children like Molly. Molly was involved in a car accident and was electrocuted by a downed power line when she tried to get out of her car.

The electrocution caused severe brain injuries, and Molly spent 116 days at Children’s Hospital receiving neurorehabilitation services, including speech, physical and occupational therapies. Molly is still recovering

from her injuries but has already gotten back to some

of her hobbies.

St. Louis Children’s Hospital Named as Lead Center in Missouri for Helping Children with Brain Injury

MEDIA, RECOGNITION & AWARDS

“Every day, eight children die as a consequence of traumatic brain injury, and four times as many children survive with significant disabilities that require long term rehabilitation,”says Jose Pineda, Director of the Pediatric Neurocritical Care Program at St. Louis Children’s Hospital. “Much needs to be done to improve outcomes.”

83Total Number of

Transplants performed in 2009 (18 Lung, 13 Liver, 6 Kidney,

23 Heart, 1 liver/lung, 22 bone marrow)


• The September 14 issue of The Sun, a newspaper published in the United Kingdom, followed the story of Tracey and her son, Lewis, who has cerebral palsy.

Tracey used her family’s life savings to fly from the UK with her son to St. Louis Children’s Hospital after hearing about Dr. T.S. Park and the selective dorsal rhizotomy procedure.

During the procedure, the nerves on the lower spinal cord are separated and then identified via an electrical stimulation. Following identification, the nerves that lead to too much muscle tone, which is a condition of cerebral palsy and spasticity, are then cut, allowing for improved spasticity and increased mobility.

Another patient of Dr. Park, 3-year-old Lili Manasco, was profiled by NBC Nightly News. Lili also underwent the selective dorsal rhizotomy procedure. Just a few months after her surgery, the stairs were no longer an obstacle.

Her walk was steadier and stronger, and her knees were much more flexible. Her confidence, happiness and quality of life have improved dramatically.

Lili Manasco received the selective dorsal rhizotomy procedure and was featured on NBC Nightly News.

• F. Sessions Cole, MD, Chief Medical Officer and Director of Newborn Medicine at St. Louis Children’s Hospital, was featured in the October 27, 2009, issue of The Wall Street Journal for his unique approach to family-centered care. The story, titled

“The Family Plan,” highlighted Cole’s belief that parents and families are not visitors, but key players on the medical team. Parents are encouraged to stay with their baby in the newborn intensive care unit and play an active role in all decisions made related to their child’s medical care.

St. Louis Children’s Hospital Launches Award-winning Website

St. Louis Children’s Hospital launched a completely redesigned website at the end of 2008—and the new design was an award-winner in 2009. St. Louis Children’s Hospital’s website received two 2009 WebAwards for “Healthcare Provider Standard of Excellence” and “Non-Profit Standard of Excellence” from the Web Marketing Association.

The website also won big at the Healthcare Internet Conference in Las Vegas.

The site took three first-place gold awards: best redesigned site, best use of web analytics and best promotion of online health content. The site took second place for best overall

website. There were more than 100 entries in 12

categories in the Best-In-Class Awards from healthcare sites all over the country.

The site was also selected from more than

1,100 entries to receive an Award of Distinction for Best Site Design from the eHealthcare Leadership Awards.

Take a look at StLouisChildrens.org



Health Care HeroIn October, Charlotte Smock Brooks, RN, was honored by the St. Louis Business Journal as a Health Care Hero.

Brooks, a pediatric cardiac care nurse, has a special compassion for children with heart problems. Realizing that many of these children are deprived of normal childhood experiences like summer camp, Brooks was inspired to help them find a way.

She worked for more than two years to organize the camp concept and gain funding—including a $50,000 grant from the St. Louis Children’s Hospital Foundation—to form Camp Rhythm. It began in 2005 with 35 campers and welcomed 61 children in 2009.

“You just realize life is a gift, and these kids make the most of it,” says Brooks.

“When they come back every year, and I see how they’ve grown and changed,

it is incredible. It is like they are my children now because I’ve seen them do all these incredible things. I think I get more from camp than they do.” Health Care Hero Article reprinted with permission of St. Louis Business Journal, Ellen Sherberg, publisher.

Dr. Michael R. Debaun Elected to Institute of MedicineIn October, Michael R. DeBaun, MD, was elected to the Institute of Medicine of the National Academy of Sciences, one of the highest honors medical scientists in the United States can receive.

Dr. DeBaun was recognized

for his major contributions

to the advancement of the

medical sciences, health care

and public health.

DeBaun holds the Ferring Family Chair in Pediatric Cancer and Related Disorders and is a professor of pediatrics, biostatistics and neurology at Washington University School of Medicine.

He runs the sickle cell program at St. Louis Children’s Hospital, and has established an internationally renowned program for treatment, education and research into the complications of sickle cell disease.

To view these stories, visit the newsroom section of StLouisChildrens.org

In the News

Award entries from 47 countries were

judged against a standard of excellence and then against other entries

in a category.


2009 Donations & Gifts

St. Louis Children’s Hospital‘s #5 ranking is the highest overall for the hospital since the survey began in 2001.

St. Louis Children’s is the only hospital in Missouri, Illinois and the surrounding eight-state region to make the list.

Additionally, four of the hospital’s specialty services achieved top five status in individual reports conducted by the magazine, with a fifth ranked in the top 10.



NATIONAL RECOGNITION

A Parents Magazine survey ranked St. Louis

Children’s Hospital #5 in the nation and

also cited five specialties in the top 10 of its

“Best Children’s Hospitals” report.

St. Louis Children’s Hospital was also

named among the nation’s elite pediatric

hospitals on the Honor Roll of U.S. News

& World Report’s 2009 listing of America’s

Best Children’s Hospitals.

Newborn medicine and orthopedics each ranked #3; pulmonary medicine and emergency medicine ranked #4; and cardiac services ranked #6.

St. Louis Children’s Hospital was also named among the nation’s elite pediatric hospitals on the Honor Roll of U.S. News & World Report’s 2009 listing of America’s Best Children’s Hospitals.

Just 10 pediatric hospitals, including St. Louis Children’s Hospital, made the Honor Roll by ranking in all 10 specialties evaluated.

Hospitals are ranked in cancer, diabetes and endocrine disorders, digestive disorders, heart and heart surgery, kidney disorders, neonatal care, neurology and neurosurgery, orthopedics, respiratory disorders and urology.

This is the seventh consecutive year St. Louis Children’s Hospital has been honored by U.S. News,

“These accomplishments are a result and a reflection of the skill, expertise and dedication of our entire staff, as well as our strong partnership with the physicians at Washington University School of Medicine,” says St. Louis Children’s Hospital President Lee Fetter.

“Additionally, we recognize our donors, whose dedication and generosity allow us to offer the unique, first-class services that make us a leader in our field.”

CHILDREN’S HOSPITALS

10BEST

23% from Corporate/Foundation

22% from Gift Planning

19% from Special Events

19% from Individuals

9% from Children’s Miracle Network

8% from Other*

AREAS YOUR GIFTS SUPPORTEDSOURCE OF GIFTS

Facilities & Equipment 35%

Pediatric Research 26%

Community Outreach 22%

Patient & Family Care 11%

Physician Partnerships, Staff Education and Employee Engagement 6%

12,343NUMBER OF GIFTS

6,821NUMBER OF DONORS

17,287,980TOTAL AMOUNT INVESTED BY DONORS IN 2009

$


To make a gift to St. Louis Children’s Hospital, please call, write or visit us at StLouisChildrens.org/giving

314.286.0988 tel 888.559.9699 toll free 314.286.0975 fax

St. Louis Children’s Hospital Foundation

One Children’s Place

St. Louis, MO 63110-1077

Address Service Requested

Non-Profit Org.U.S. Postage

PAIDSt. Louis, MO

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