Jun 27, 2015 - some of the best outcomes in the country. Not only do we intend to keep it that way, but with the launch
HARNESSING OURSTRENGTHS Spring 2015 With the help of caregivers at Children’s Hospital Colorado, 6-year-old Conner beat cancer and is now stronger than ever. Page 11
Contents Page 11
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Why Courage?
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Introducing Courage is…
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Research Spotlight
An essay by President and CEO Steve Winesett
What is this Campaign all about?
Dr. Bruce Appel sheds light on neurological problems
11 Patient Spotlight
Six-year-old Conner fights cancer with courage and perseverance
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13 The Big Debut
New Campaign music video features music by Phillip Phillips
14 118 Years of Courage A look back at our history
16 Courage Then and Now
How Dr. Joseph Butterfield transformed the field of neonatal care
18 Courage in Action
Dr. Tim Crombleholme’s race against time and death
20 Voices of Courage
We ask our patients, “What does courage mean to you?”
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22 Many Ways to Give
Giving societies recognize monumental donor impact
24 Inspirational Donors
How Cille and Ron Williams turn visions into reality
25 Why I Give
Donors tell us what inspires them to support Children’s Colorado
26 Courage Through Their Eyes
An essay by Children’s Colorado patient Noah Devolve
ACKNOWLEDGEMENTS The Courage is… magazine is a publication of Children’s Hospital Colorado Foundation, a non-profit organization dedicated solely to advancing the mission of Children’s Hospital Colorado. Editors: Megan Lane, Tina Garbin, Charles Reyman Contributors: Noah Devolve, Jon Jefferson, Monique McCoy, Catrine Watt, Steve Winesett Designed by: Welch Creative Group Illustrations by: Alicia Varga 2 |
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Dear Friends, It is our great honor to introduce Courage is… The Campaign to Transform Children’s Health. In the summer of 1897, a handful of dedicated medical staff — most of them volunteers — established a seasonal tent hospital in a Denver park to help babies and toddlers struggling with a simple, urgent challenge: breathing. No one knew it at the time, but those canvas tents, kerosene lanterns and visionary caregivers laid the foundation for one of the top-ranked children’s hospitals in America. Our founders would be astonished if they could see Children’s Hospital Colorado today. But they also would recognize our commitment to continually innovate, grow and improve in order to save children’s lives. Today, almost 120 years later, Children’s Colorado stands at a critical juncture. With a world-renowned team of pediatric experts, state-of-the-art facilities and a proven track record of success, Children’s Colorado is uniquely positioned to make transformative changes for children. It’s a position that confers great responsibilities and opens up a world of unprecedented opportunities. As we officially launch the Courage is… Campaign, Children’s Colorado is poised to achieve even greater accomplishments. Competition for research dollars may be fierce, but our physician-scientists are working tirelessly to discover breakthroughs that could mean the difference between life and death for our young patients — and for children around the world. Furthermore, our clinical care is unparalleled in the region, and our pediatric experts continue to pioneer new therapies that are changing children’s lives for the better.
Laura Barton Campaign Co-Chair
Barth and Maureen Whitham Campaign Co-Chairs
Drawing on our unique strengths, one can only imagine the boundless possibilities the future holds and the transformative changes that can be realized with the help of our community. Standing shoulder to shoulder with you, the Courage is… Campaign will provide the critical funding needed to make great leaps forward. Our tradition of leadership through bold innovation positions us to achieve today what we could only dream of in the past. Together, we can reimagine pediatric medicine and transform children’s health.
The Courage is… Campaign offers donors the chance to make an extraordinary impact; right here, right now. We invite you to join us.
Laura Barton Campaign Co-Chair
Barth and Maureen Whitham Campaign Co-Chairs
Cille and Ron Williams Honorary Chairs
Cille and Ron Williams Honorary Chairs | Spring 2015
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Why
Courage?
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once heard a story of a baby in the Neonatal Intensive Care Unit. The baby was experiencing great difficulty breathing, and caregivers felt he might be too weak to continue struggling on his own. They thought intubation would help him breathe more easily. But this baby had more strength than they knew. Three times doctors tried to intubate him. And three times he fought and coughed out the tube. Finally, doctors came to realize he was strong enough to breathe on his own. That he himself would lead the fight. I don’t know where that little boy is today, but I think of him often. Inspired by his courage, I wonder where the other patients who have come through our doors might be today. I envision a little boy on a playground lending a helping hand to another child who isn’t as strong. Or perhaps it’s a child helping a friend deal with an unkindness. Or maybe it’s the countless children who, in the face of life-threatening injury or illness, summon the will to live and be healthy again. The thought of that baby demanding to breathe on his own reminds me of all the children and families who carry the fight forward. To me, they embody my understanding of courage. Courage is, to me, the connective tissue that brings together all of the young patients and families in need, all of the caring health professionals, all of the technological marvels, and all of the pioneering research at Children’s Hospital Colorado. Each day that I work at this remarkable place, I see these things converge. I see courage. I see courage in families who pull together, rather than allow daunting challenges, and even heartbreak, to tear them apart. I see courage in the eyes of a teenage girl who loses her hair during chemotherapy. Instead of showing fear, she speaks hopeful words of a bright future while wondering aloud if her hair might return curly rather than straight.
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Steve Winesett, Children’s Hospital Colorado Foundation President and CEO
I see courage in a little boy who pushes back tears and bites his lip during a procedure, while his father secretly does exactly the same thing. Both struggling to give strength to the other. I see courage in those whose faith grows, rather than shrinks, in times of great uncertainty. I see courage in the sacred bond between caregiver and those cared for, as they draw strength from each other. I hear courage in the voices of caregivers who come to families in moments of crisis with words of strength, reassurance and hope. Caregivers who have sought out, with great dedication and sacrifice, the world of pediatric academic medicine, where the goal is not only treating and curing today, but also generating new knowledge and breakthroughs to prevent illnesses tomorrow. Most of all, I am humbled by the courage of families who, in struggling for release from the grip of fear, look it in the eye and fight on. Courage refuses to submit. And that changes everything. To see what courage looks like, one only has to step through the doors of Children’s Hospital Colorado.
Courage thrives here.
A former NICU patient, Caley was born at 27 weeks, weighing 1 pound, 6 ounces
Every day at Children’s Hospital Colorado, we witness the remarkable courage of our patients in the face of seemingly insurmountable challenges. Their strength is our inspiration as we work to build a world where all children can grow up thriving in health — a world where most of the courageous moments in a child’s life have nothing to do with health care and everything to do with strength, hope and possibility. | Spring 2015
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oldly exploring the
possibilities has been the focus of Children’s Hospital Colorado for more than a century. Throughout our history, visionary caregivers have laid the foundation for what has grown to be one of the finest children’s hospitals in America. With a renowned team of pediatric health care experts, world-class facilities on the Anschutz Medical Campus and a robust network of care dedicated to treating children as close to home as possible, Children’s Colorado has generated powerful momentum.
We are uniquely positioned to make great strides forward on behalf of children’s health. Today, Children’s Colorado stands at a critical juncture. Now, more than ever before, our goal of giving children healthy futures is within reach — yet the challenges
are significant. Children continue to face daunting illnesses and injuries, while our physician-scientists
have to battle for funding in an environment of ever-diminishing research dollars — funding critical to achieving the scientific breakthroughs upon which these children depend. In addition, competition for international medical leadership is intense. We must continue to attract and retain the best and the brightest in order to provide the highest quality care.
We need courageous and generous partners to help us build a healthy, happy future for our children. That is why we are honored to introduce Courage is… The Campaign to Transform Children’s Health.
Philanthropic support will be the critical factor in advancing our vision to reimagine the future of pediatric medicine. Throughout our history, the courage demonstrated by children in need and the health professionals who serve them has made an extraordinary impact at Children’s Colorado. That same courage will advance the cause of children’s health well into the future.
Will you join us?
The Courage is… Campaign will transform the health and wellbeing of children in Colorado, across the Rocky Mountain region and around the world. With the help of the community, this Campaign will build on our history of accomplishments while making strategic investments in programs that are poised to advance pediatric care in exciting new ways.
Hand in hand with our donors, we're transforming the future of children's health. Visit www.courageis.org to learn more. 6 |
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Campaign Philanthropic Opportunities
OVERALL CAMPAIGN GOAL
$400 MILLION
The Courage is…Campaign seeks to transform the health and well-being of children by focusing on several key areas. Investing in Scientific Discovery
By recruiting and retaining the brightest minds in medicine and science, Campaign funds will reinforce Children’s Hospital Colorado’s position as an international force in overcoming children’s health care challenges through world-class research.
Research
GOAL: $71 Million
Endowed Chairs and Funds
$300 MILLION
GOAL: $50 Million FUNDS RAISED TO DATE
$190 MILLION
in Clinical Care Excellence + Investing Together with our generous donors, we will invest in innovative,
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state-of-the-art programs that build and deliver the highest quality care for children.
Clinical Care Excellence
GOAL: $84 Million
Investing in Building Healthy Communities By expanding services across the Rocky Mountain region, Campaign gifts will strengthen access to high-quality pediatric care. In addition, unrestricted gifts to the Children’s Fund will provide critical support for the areas of greatest need within the hospital.
GOAL: $100 Million
GOAL: $95 Million
Children’s Fund
Future Gifts | Spring 2015
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CAMPAIGN FEATURED OBJECTIVES The Courage is...Campaign features several key objectives that when achieved together will transform the health and well-being of children in Colorado and around the world.
CAMPAIGN OBJECTIVE #1: Investing in Scientific Discovery The Courage is... Campaign seeks to strengthen our research efforts and advance the progress of pediatric medicine. We’re asking generous donors to invest in our Research Institute to accelerate the pace of groundbreaking discoveries at Children’s Hospital Colorado. The best part about investing in research? Our discoveries are shared with caregivers everywhere, so donations truly make a global impact. The Campaign also seeks new endowment gifts, which provide a steady stream of permanent support for breakthroughs that can transform the way we diagnose and treat childhood disease.
Our Campaign goals for Scientific Discovery include: Reinforcing Children’s Colorado’s position as an international force in overcoming children’s health care challenges through world-class research Providing seed funding for a new generation of scientists Increasing resources for mid-career physician-scientists who are on the brink of new discoveries Increasing support for senior-level researchers by increasing the number of endowed chairs and funds Increasing personalized medicine approaches to identify disease pathways and create new therapies and interventions Expanding integrated research capabilities, such as genomics, informatics and experimental therapies, to support specific areas of care Bringing more of the brightest minds in pediatric medicine and science to Colorado and keeping them here
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SHEDDING LIGHT ON NEUROLOGICAL PROBLEMS
Dr. Bruce Appel ‘fishes ‘ for breakthroughs
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onsider the lowly zebrafish. Throughout its development from embryo to hatchling — a mere 72 hours — it’s so slight that it’s clear, its tiny heart and spinal cord plainly visible through its glassy tissue. Fully grown, it’s barely the length of a pinky finger. To aquarium snobs, the zebrafish is an entry-level species: cheap and hardy, but drab and boring. To developmental biologists like Dr. Bruce Appel, though, the zebrafish is thrilling, prolific and illuminating. In Appel’s lab the zebrafish is literally shedding light on how the nervous system works and how it can go awry. As one of Children’s Hospital Colorado’s trailblazing researchers, Appel studies axons, the wiring that connects brain neurons and motor neurons to muscles. His specific focus is myelin, the white sheath that wraps axons the way insulation wraps electrical wires. Myelination, the sheath-wrapping process, is crucial to brain development and learning, especially during early childhood. “You don’t form new axons after about age 8,” Appel notes, “but if you learn a new skill — juggling, playing the guitar — you create new myelin, new connections in the brain.” Conversely, a lack or loss of myelin can interfere with brain or motor function. Appel’s technique for studying myelination sounds like something out of a science fiction movie. Using zebrafish DNA that’s been modified by inserting a sequence from bioluminescent jellyfish and corals, he tinkers with genes associated with myelination, adding or removing bits to observe the effect.
Then comes the big reveal. “Shine a laser light on the animals you’ve modified,” Appel says, “and the myelin sheath around the axons glows.” No sheath, no glow; it’s simple yet astonishing. Given the zebrafish’s prodigious fertility (females produce 500 eggs per week) and warpspeed development (the brain and spinal cord start developing just nine hours after fertilization), the team can test and observe the effects of many variables, seeing which ones torpedo myelination and which ones encourage it. For Appel, who’s been studying zebrafish for more than a decade, myelination is the Great Frontier, the key to breakthroughs in neuroscience. “Many of the big-ticket brain disorders — schizophrenia, autism, bipolar disorder — are ‘white-matter’ disorders, myelin disorders,” he says. “If we can figure out the activity code for wrapping axons, we can start figuring out how to fix problems.” And that could be a game changer for children facing debilitating neurological diseases. It’s a long way from the aquarium to the clinic, but at the end of that lengthy tunnel, Appel definitely sees it: the light, bright and beckoning.
RESEARCH SPOTLIGHT
CAMPAIGN FEATURED OBJECTIVES
CAMPAIGN OBJECTIVE #2: Investing in Clinical Care Excellence
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Children’s Colorado is already unparalleled in the region for outstanding patient care. Our caregivers work tirelessly to better diagnose, treat and cure pediatric illness, and our clinical programs deliver some of the best outcomes in the country. Not only do we intend to keep it that way, but with the launch of the Courage is…Campaign, we’re ready to take our clinical care to the next level by focusing on prevention and developing new therapies and treatments. This Campaign will reinforce Children’s Colorado’s position as an international leader in solving children’s health care challenges. Your donations will support innovative, state-of-the-art programs that build and deliver the highest quality care, while also generating new treatment breakthroughs.
Campaign goals for Clinical Care Excellence include: Investing in cutting-edge therapies like precision medicine, cellular and protein therapy, and experimental therapeutics to enhance care and minimize side effects Ensuring healthier communities by investing in prevention and early intervention programs Investing in virtual health programs to increase access to care Accelerating the pace of innovation and breakthroughs in our programs of recognized eminence, including:
Breathing Institute
Center for Cancer and Blood Disorders Colorado Institute for Maternal and Fetal Health and Colorado Fetal Care Center
Digestive Health Institute
Heart Institute
Neuroscience Institute
Orthopedics Institute
Pediatric Mental Health Institute
Pediatric Surgery Center
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CONNER FIGHTS CANCER
with courage, patience and perseverance
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ix-year-old Conner just had an MRI at Children’s Hospital Colorado, and his mom, Cristie, is nervous.
“I didn’t sleep last night,” she says. Just over two years ago, Conner was diagnosed with Ewings sarcoma — a rare and highly aggressive form of bone cancer. Following a difficult battle that included 17 rounds of chemotherapy, 12 blood transfusions and four surgeries, Conner was declared cancer-free in 2013. However, he has to return to Children’s Colorado every three months for scans to ensure that the cancer hasn’t returned. Today’s visit marks the fifth time that Conner has been tested since his initial cancer victory. But this time, his parents are especially worried. Conner has developed a persistent cough, and a recent chest X-ray revealed a shadowy streak near his heart. Today’s scan will provide more information, but the family won’t have the results until later in the day.
PATIENT SPOTLIGHT When Conner was first diagnosed, his family was preparing to move from Texas to Colorado Springs. The day the movers came, Conner’s parents took him to urgent care for what they thought was a respiratory infection. But further testing revealed something far more serious. Conner had a tumor in his upper chest wall. “At first we thought it couldn’t possibly be cancer,” says Conner’s father, Eric. “He seemed so young and so healthy.” The family drove through the night from Texas to Colorado and began treatment at Children’s Colorado the following morning. For 10 months, Conner underwent a rigorous course of chemotherapy. Halfway through, doctors performed an intricate surgery on his chest wall to remove what remained of the tumor. To fully remove the mass, they also had to remove several of Conner’s ribs. “He recently told me there were times when he thought he was going to die,” says Cristie. As difficult as his cancer battle was, there was one thing that Conner always looked forward to at Children’s Colorado.
“They have Xbox with WiFi,” explains Eric. “Every chemo session, he’d download a new game. It sounds so simple, but it was really important to him — especially during the times when he was doing chemotherapy eight hours a day, several days a week.” Now that Conner has been deemed cancer-free, the family tries to stay focused on the future. But Conner’s quarterly scans are always a painful reminder of what they’ve been through. “It’s almost like we have to go to a parole hearing every three months,” says Cristie. “Do we get to continue to live and be healthy and be free? Or do we have to go back to ‘jail’ and start over again?” Later that day, the family gets the test results. Conner’s scans are clear. The streak on the X-ray was determined to be scar tissue. And that means that Conner’s chances at a healthy future are looking good. “Perseverance has always been a cornerstone of our family,” says Eric. “It’s what gets us through the tough times.”
Your generous donation will support the courage demonstrated every day by Conner, his family and the countless others who work tirelessly to advance pediatric clinical care excellence.
Winter 2015 | www.ColoradoHealth.org | Health Elevations | Spring 2015
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CAMPAIGN FEATURED OBJECTIVES CAMPAIGN OBJECTIVE #3: Investing in Building Healthy Communities Children’s Hospital Colorado already has a world-class facility on the Anschutz Medical Campus — not to mention 15 additional care locations and 500+ outreach clinics across the Rocky Mountain region. But that’s just the beginning. By expanding services all across Colorado and the Rocky Mountain region, the Courage is… Campaign will ensure better access to highquality pediatric care for those who need it most. We will strengthen our network of care so that families can access the very best pediatric experts closer to the places they call home. This effort includes increasing the use of virtual health in rural areas, as well as expanding partnerships with community service agencies to bolster the impact of prevention and early intervention programs for the most vulnerable children.
In addition, the Courage is…Campaign will work to achieve the following:
Children’s Fund
Unrestricted gifts to the Children’s Fund support the areas of greatest need within the hospital, covering everything from treatment costs for uninsured children to state-of-the-art, child-sized medical equipment. The Children’s Fund also covers vital services not reimbursed by traditional insurance plans, such as the Child Life/Therapeutic Recreation program, which offers patient education and resources for families faced with medical crises. This critically important fund allows us to respond efficiently to any clinical need while also providing children and families with crucial support and resources.
Building Our Future
It takes courage to invest in the long term, but no place is better equipped to use that investment to improve kids’ health than Children’s Colorado. Planned gifts are a vital part of the Campaign because they offer the sustained support we need to foster healthier futures for generations to come. By making a bequest, establishing a charitable annuity or setting up a trust to benefit the hospital, you build a courageous legacy that will last well beyond your lifetime.
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American Idol winner’s hit single featured in Campaign music video To celebrate the launch of the Courage is… Campaign, Children’s Hospital Colorado Foundation has released a new video, The Art of Courage, featuring music from American Idol winner Phillip Phillips. The singer/ songwriter showed his support of pediatric healthcare by lending the rights to his hit single “Unpack Your Heart” for use in the official Campaign music video.
UPCOMING SIGNATURE EVENTS June 27, 2015
Join us for the inaugural Climb for Courage when the U.S. Air Force Academy's Falcon Stadium becomes home to Colorado Springs’ only stair climb race. Participants can register as individuals or as a team to climb more than 2,700 stairs (or 2.7kms) to raise money for Children’s Colorado.
www.childrenscoloradofoundation.org/climbforcourage
July 18-20, 2015
Phillip Phillips
The short film depicts courageous Children’s Colorado patients who overcame tremendous medical challenges and went on to live full and active lives. The lead character in the video, 11-year-old Anicee, is an accomplished painter and lifelong orthopedic patient at Children’s Colorado. As the wheelchairbound artist practices her craft throughout the film, each brush stroke magically brings to life fellow patients’ stories. The viewer is transported to scenic locations across Colorado, including Winter Park Ski Resort, where 16-year-old cancer survivor, amputee and Paralympic hopeful Garrison Hayes carves effortlessly down the slopes. Other featured patients include a gifted violinist and a talented dancer. The Art of Courage displays the limitless possibilities a healthy childhood affords our patients. Phillips made a special stop at Denver’s Seawell Grand Ballroom for a private concert on May 28 to celebrate the launch of the Campaign and debut The Art of Courage video for adoring fans and Children’s Colorado supporters. Watch the video at: www.courageis.org
With more than 2,000 fearless riders from all walks of life, the Courage Classic presented by Prologis has supported Children’s Colorado patients and their families for more than 25 years. The three-day bike tour through Colorado’s high country accomplishes more than conquering challenging mountain passes; it benefits kids in your community. www.childrenscoloradofoundation.org/courageclassic
August 10, 2015
Join dedicated golfers for an exclusive tournament that raises critical research funds for Children’s Colorado. RE/MAX International co-founder Dave Liniger has once again generously offered the Sanctuary golf course, one of the most prestigious courses in Colorado, as the site for the event. For more information, call 720-777-1759.
October 17, 2015
One of Denver’s premier charity blacktie events, the annual Children’s Gala brings together generous Children’s Colorado supporters from across the Rocky Mountain region for an elegant evening of dinner and entertainment in support of the hospital. This year’s Children’s Gala is sold out.
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118years of Courage
1897
More than a century of history…
A proven track record of innovation … A future of possibility… With new discoveries that are just within reach…
Children’s Hospital Colorado begins as a modest summer tent hospital, operated outdoors by volunteer nurses and limited medical staff.
It’s a trajectory that we can’t allow to level off… …but to maintain our momentum, we need your help.
1953 Dr. John Grow
1917 Facing increasing demands, Children’s Colorado outgrows its original location and raises more than $200,000 to build a larger facility in downtown Denver with 100 beds.
1968
performs the hospital’s first open-heart surgery, and Children’s Colorado soon becomes nationally known for specialties such as cardiac surgery and critical care for newborns.
The hospital sponsors Colorado’s first amputee ski school at Arapahoe Basin. Today, the program has expanded to become a national model for teaching sports to disabled children.
1908
The hospital officially incorporates and within two years is serving patients in a converted residence at 2221 Downing St. with 30 beds.
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1908
1953
1974
The first Burn Program in Colorado begins treating pediatric patients.
s &counting 2007
The community gives over $273 million for the Imagine the Miracles campaign, enabling Children’s Colorado to move into a new state-ofthe-art hospital on the Anschutz Medical Campus.
1978 Dr. James Todd, a Children’s Colorado physician-scientist, garners international attention after publishing the first description of Toxic Shock Syndrome.
1990
1988
The first-ever Courage Classic bicycle tour raises critical funds for the hospital.
Children’s Colorado pioneers the use of inhaled nitric oxide for the treatment of pulmonary disease in newborns — a life-saving therapy that’s now used around the world.
The hospital begins expanding across Colorado, creating a network of care that today includes 15 locations and over 500 clinics throughout the Rocky Mountain region.
2012 The Colorado Institute for Maternal and Fetal Health opens its doors to provide comprehensive specialized care for high-risk pregnancies.
2005 Children’s Colorado is first recognized for nursing excellence by the prestigious Magnet Recognition Program®, an honor achieved by only 7 percent of hospitals nationwide.
1988
2007
2015 Courage is… The Campaign to Transform Children’s Health is officially announced.
We invite you to partner with us as we launch into the next century of innovation, discovery and outstanding clinical care. Now is the time to translate our tremendous strengths and opportunities into transformative change. By investing in the Courage is… Campaign, you will become a part of our hospital’s courageous history.
We hope you’ll join us as we work to create a future of health, hope and possibility for all children. | Spring 2015
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NOW
COURAGE THEN The Visionary
Dr. L. Joseph Butterfield exemplified a long history of courageous caregivers
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f you travelled back in time 50 years, you’d hardly recognize the field of neonatal care.
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Infant mortality was high in those days — about four times what it is today. It was a time when most community hospitals lacked the full range of resources to effectively treat premature and ill newborns. A time when doctors had to tell desperate mothers that nothing could be done; when countless parents grieved babies who died within days of birth. These were the hard realities when famed neonatologist L. Joseph Butterfield began overseeing the Newborn Center at Children’s Hospital Colorado. Recognizing the region’s tremendous need for better newborn care, Dr. Butterfield had a vision: He wanted Children’s Colorado to become a care center for premature and sick babies across a vast 500,000-square-mile area, offering treatment and technologies that weren’t available in most community hospitals. The Newborn Center had just seven beds when it first opened in 1965. But that didn’t stop Butterfield from establishing one of the country’s first emergency neonatal transport teams in the early 1970s to bring babies from the far reaches of the region to Children’s Colorado. Before long, the Newborn Center was gaining national attention. Within 10 years, it had quadrupled in size and was admitting nearly 1,000 newborns a year from a seven-state region.
The late Dr. Butterfield saved countless babies’ lives through outreach, education and outstanding care 16 |
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Forefather of family-centered care
Even as thousands of babies were receiving life-saving care through the Newborn Center, Butterfield, who himself had a daughter born with a congenital illness, never forgot the personal touches. He established a pioneering neonatal hospice program that provided support and a peaceful environment for families whose infants were dying. “Family and bereavement support was important to him,” said Susan Clarke, a nurse who worked under Butterfield as a perinatal outreach coordinator for nearly 15 years. “Even for the families whose babies died, I’m hopeful that they can look back and say that they received the best possible care in a supportive environment.” Butterfield also pioneered new policies regarding parental involvement. He did away with visiting hours at the Newborn Center, allowing parents to come and go as they pleased. One nurse recalled how he placed a set of steps outside the window of the nursery so siblings could climb up to see their brothers and sisters. He also encouraged parents to cuddle and care for their babies — a revolutionary concept at a time when many hospitals believed that having family at the bedside was disruptive. “He would ensure that, at the soonest possible point, mothers and fathers could see and touch their babies, even if it was just holding their fingers through the incubator door,” said Clarke.
Saving lives through education
Bringing babies to Children’s Colorado for treatment was just the beginning. From the time the Newborn Center
opened, Butterfield worked tirelessly to improve evidencebased care through a Perinatal Outreach Education Program. Butterfield reached out to caregivers across the region to enhance knowledge-sharing, offering advice, training, and a telephone hotline for consultations and transports. Butterfield’s outreach efforts were instrumental in helping local providers learn how to stabilize and treat critically ill babies more effectively. Within years, his team had transformed newborn care across the region. Colorado’s infant mortality rate — the fifth highest in the nation in 1960 — was the second lowest by 1978. “He had the passion, the patience and the willingness to go out and talk to people,” said Doug Jones, M.D., former chair of the Department of Pediatrics. “He was a big believer in the power of bringing people together.”
A lasting legacy
Butterfield died in 1999 at the age of 72, but not before building an enduring legacy. The Neonatal Intensive Care Unit at Children’s Colorado has continued to grow and today has 86 beds and an outstanding team that treats thousands of babies every year. Most importantly, Butterfield’s legacy of providing excellent care and support for the entire family has become a core tenet of the Children’s Colorado treatment philosophy. “We wouldn’t be where we are today if it weren’t for Dr. Butterfield,” said Clarke. “He was indeed a visionary beyond measure.”
“We wouldn’t be where we are today if it weren’t for Dr. Butterfield... He was indeed a visionary beyond measure.”
Winter 2015 | www.ColoradoHealth.org | Health Elevations | Spring 2015
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Courage in action F
Four-minute miracle: Dr. Timothy Crombleholme’s race against death and time etal surgeon Tim Crombleholme pushes a tube thinner than a drinking straw — the tube of a fetoscope — into the belly of a frightened Phoenix woman. She’s 17 weeks pregnant with identical twins, and they’re in danger.
A routine prenatal visit the day prior revealed that one twin had a barely perceptible heartbeat, and the woman’s doctor diagnosed twin-to-twin transfusion syndrome (TTTS), a disorder in which one fetus draws more blood from the placenta than the other. Severe TTTS can be lethal to both twins, but if it’s treated — using a pinpoint laser to cauterize blood vessels and balance the blood supply — survival rates for both babies can top 95 percent. The woman and her husband traveled through the night to reach Children’s Hospital Colorado; to reach Dr. Crombleholme, a renowned fetal surgeon. But in this case, it isn’t TTTS that Crombleholme discovers. Further tests reveal a more complex problem: twin anemia polycythemia sequence, in which one twin’s blood has a deadly deficiency of red blood cells, while the other’s has a dangerous overabundance. Saving both twins will be difficult — unlikely, in fact — but losing both is a virtual certainty without surgery. And so Crombleholme presses on through the wall of the uterus and into the amniotic sac with the fetoscope, which incorporates a tiny camera and a fiber-optic laser. “We’re in,” Crombleholme says, and the race begins. As if the life-and-death stakes and microsurgical complexity weren’t pressure enough, there’s also the tyranny of time: Survival rates drop if the laser procedure takes more than five minutes, so one of the nurses calls out the elapsed time at 60-second intervals. Zeroing in on blood vessels shared by both twins, Crombleholme fires the laser to cauterize the oversupplied twin’s branch of the vessel. “Sixty seconds,” calls the nurse. Crombleholme fires more laser bursts and soon completes the vascular separation of the twins’ circulations. Remarkably, fewer than three minutes have passed.
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The lasering done, Crombleholme hones in on the umbilical cord of the weaker twin, inserts a needle and draws a blood sample. While a tech analyzes the blood, Crombleholme examines the placenta. What he sees is not encouraging: The sick twin’s umbilical cord is receiving just 10 percent of the blood supply. The bloodwork brings more bad news: The distressed twin is acutely anemic, with a red blood count barely half of what it should be. Crombleholme calls for 7 milliliters—about two teaspoonfuls—of high-hematocrit blood, centrifuged to pack in more red blood cells. The final step is the transfusion. Normally it could be injected into the umbilical cord without shifting the needle that drew the blood sample. But the sick twin’s heart is too weak to take a sudden load. Crombleholme decides to inject the blood into the baby’s abdominal cavity, so it can be absorbed over 24 hours. Seconds ticking, he shifts the needle and gently injects the transfusion. At last he withdraws the fetoscope. But “at last” comes just 4 minutes and 15 seconds after the initial “we’re in.” The weaker twin still faces an uphill battle. But the stronger one now has a 92 percent chance of survival, thanks to a small miracle performed one Wednesday afternoon at Children’s Colorado.
Colorado Institute for Maternal and Fetal Health pushes the boundaries of medicine Built in 2011, the Colorado Institute for Maternal and Fetal Health provides mothers and babies with comprehensive, specialized care before, during and after pregnancy. With a focus on pre-term babies requiring surgical care within 72 hours of birth, it boasts a team of world-renowned fetal specialists — like Dr. Timothy Crombleholme, one of the world’s foremost fetal surgeons. Crombleholme is surgeon-in-chief at Children’s Hospital Colorado and also leads the Colorado Fetal Care Center, a program within the Colorado Institute for Maternal and Fetal Health that is entirely focused on babies with known or suspected fetal abnormalities. Crombleholme is nationally recognized for his success in performing in-utero surgeries, which have helped to save countless babies’ lives — all before they’re even born.
Winter 2015 | www.ColoradoHealth.org | Health Elevations | Spring 2015
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Haley, age 11
“Courage is having hope and being brave.” Heart Institute patient
“Courage to me means to stand up for what you think and believe in, to be brave and fearless.”
Blake,
Voices of Jessa, age 14
age 12
Two-time cancer survivor “I feel courage is overcoming something that scares you. It could be anything – just knowing that you can do it. Like when I knew that I was going to beat cancer, and I did.” Burn Program patient 20 |
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Eamon, age 10
Lia Gore, M.D., Center for Cancer and Blood Disorders
Heart transplant patient
“Courage is here at every moment, and it walks in the door with every person. It’s pervasive in everything that happens here, because patients have to have it to walk in and they have to have it to leave. All of the staff – the nurses, the physicians, child life workers, the pharmacists – they all require courage to keep coming back, even on tough days. But it’s the kids who really have the greatest courage.”
“I think courage means someone who steps up for another person.”
Courage We asked our patients and caregivers: “What does courage mean to you?” Tanner,
age 12 “When you live day-to-day with a medical condition, you get up every morning and face those challenges and never let them hold you back. That is real courage.” Mindy and John Catlin on behalf of their son
Neuroscience Institute patient
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Giving societies recognize Every gift to Children’s Hospital Colorado impacts the life of a child. And when donors pool their philanthropic investments, that impact grows exponentially. That’s where our Giving Societies come in. Giving Societies allow Children’s Colorado to recognize our most generous donors. The members of these societies aren’t just generous – their collective support moves mountains for children’s health. The launch of the Courage is… Campaign further heightens our need for generous donors who want to partner with us to make transformational changes in pediatric health care. As a member of one of our giving societies, your gift, along with gifts of like-minded donors, will create the foundation of support needed to continue the lifesaving work of Children’s Colorado.
Which society will you join?
The Mae B. Boettcher Society recognizes Named for one of Children’s Colorado’s most visionary supporters, the Charles C. Gates Society recognizes donors who have contributed $1 million or more to Children’s Colorado during their lifetimes or through their estates. Charles C. Gates, Jr. was an accomplished business leader and a generous philanthropist who strongly believed in the mission of Children’s Colorado. Like him, Gates Society donors are visionaries. They have made lasting, invaluable investments in children’s health. Thanks to these major donors, we’ve seen a 50 percent increase in pediatric research at Children’s Colorado
donors who have contributed $250,000 to $999,999 during their lifetimes or through their estates. Mae Boettcher’s passion and inspirational philanthropic support for Children’s Colorado stemmed from her service on the Board of Directors from 1951 until 1976. Similarly, Boettcher Society donors support Children’s Colorado’s efforts to provide the best health care outcomes for children in our community, while also supporting groundbreaking research to find new treatments and cures.
since moving to the Anschutz Medical Campus in 2007, while our endowment has grown to
Today has 208 members
more than $730 million. Founded in 2010 with 170 inaugural members
Other Ways to Give
Founded in 2006 with 60 inaugural members, giving $212 million total
Circle of Champions
Today has 112 members, giving $500 million total
Recognizes corporations and foundations giving $50,000 or more in a calendar year.
Circle of Leadership Recognizes corporations and foundations giving $10,000 to $49,999 in a calendar year.
Tammen Society 22 |
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Recognizes individuals who provide for Children’s Colorado through a planned gift.
monumental
donor impact “Over the past 20 years, local Children’s Circle of Care members have collectively given $255 million for Children’s Colorado. This group has been instrumental in helping our hospital become the worldclass institution that it is today, and we really can’t thank them enough for their dedication to the region’s children.”
Children’s Circle of Care recognizes individuals, family foundations and private companies making gifts of $10,000 or more annually. Founded 20 years ago by 19 of the leading pediatric hospitals in the nation (including Children’s Colorado), the international Children’s Circle of Care recognition society was established to inspire individual investment in pediatric health. The society has since become a transformative force for improving children’s health, with members collectively raising more than $5.2 billion in funds across North America since 1994. By becoming a member of Children’s Circle of Care, you join thousands of generous
Steve Winesett, President and CEO of Children’s Hospital Colorado Foundation
philanthropists who are dedicated to creating healthier lives for children.
Dollars given annually by Children's Colorado Children's Circle of Care Members $16.7 million
$16
Children's Hospital Colorado Children's Circle of Care Members
$12
288
300
$8
250 200
$4 in millions
$0
150 100
$1.6 million 1994
2014
50 0
29 1994
2014
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With dedication and generosity, Cille and Ron Williams turn visions into
reality
C
ille and Ron Williams are known for many things: their longtime service to Children’s Hospital Colorado, their inspirational involvement in childhood initiatives, their shared value of helping others.
Perhaps one of Ron’s greatest gifts is his ability to look at an organization, dream of what it could be and then — the most important part — bring that vision to life. That’s exactly what he did almost 10 years ago as one of three co-chairs of Imagine the Miracles — a $273-million campaign that transformed Children’s Colorado into a world-class hospital on the Anschutz Medical Campus with many additional locations across the state. And that’s exactly what he and his wife Cille are working to do today as Honorary Chairs of the Courage is… Campaign. “Cille and I have loved our time serving Children’s Colorado over the years and are thrilled about this current opportunity,” said Ron. “We realized that building the new hospital was only half the job — now we have to make sure it accomplishes all we dreamed it would.” Ron began his service on the Children’s Colorado Board of Directors in 1989 and is now a lifetime member. He played a pivotal role in the decision to move the hospital to the Anschutz Medical Campus in 2007. The couple also made the first leadership gift to Imagine the Miracles, which helped to inspire donors throughout the community and establish Children’s Colorado as the irreplaceable asset it is today.
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“We realized that building the new hospital was only half the job – now we have to make sure it accomplishes all we dreamed it would.” Ron Williams, Honorary Campaign Chair
More recently, the couple established the Cille B. and Ronald W. Williams Endowed Chair in Executive Leadership, a unique gift to support innovative leadership through the office of the Children’s Colorado CEO. They also consistently support the Children’s Gala and have included the hospital in their estate plans. They are founding members of the Charles C. Gates Society, which recognizes donors who have given more than $1 million in their lifetimes. “I think it’s the spirit of helping others that drives philanthropy — regardless of the resources you may have,” said Ron. Thanks to Cille and Ron’s philanthropic spirit, the Courage is… Campaign already is one step closer to making transformational changes for children’s health.
Why I Give
We asked some of our most loyal donors: Why do you support Children’s Hospital Colorado?
“I
give to Children’s Hospital Colorado because I believe that all children should have the opportunity for good health. My late husband and I were always looking for ways to help the neediest among us, and I feel good knowing that my gift is being used to support new research and the best care for so many children — many of whom have limited financial resources. It’s truly an honor to support a hospital that treats all children, regardless of their ability to pay.” Mildred Nienaber, creator of the William F. and Mildred J. Nienaber Endowed Funds for Child Health Research and Patient Care
“M
y dad taught me to give back and to be true to what you believe in. Well, I believe in Children’s Hospital Colorado. And I’m not just saying that because they saved our daughter’s life. I truly believe it’s an honor and a privilege to support Children’s Colorado. I love this place, and I know that I’m making our community better for all of us when I give here.”
Kevin Reidy, Chair of the Children’s Hospital Colorado Board of Directors and co-host of the 2015 Children’s Gala try to teach my children the difference between what you want (sweets) and what you need (fruits and veggies). Likewise with my personal philanthropy, there are things I may want to support, and there are things I feel that I absolutely need to support. I need to give to Children’s Hospital Colorado because I need to make sure that this place — with the very best docs, the very best people — is here when you need it. I give for today but I give for the future, too, because the need is always going to be here. And so is Children’s Colorado.”
“I
Ann Reidy, loyal donor and co-host of the 2015 Children’s Gala
“O
ur youngest child is a patient at the Heart Institute, so we went from not knowing very much about Children’s Hospital Colorado to being ‘all in’ very quickly. Our son had two open heart surgeries there, and they saved his life. Once the dust settled and he started doing better, we wanted to do everything we could to support the hospital.”
Cristen Calamari, Children’s Circle of Care Member
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M
ark Twain once said, “Courage is resistance to fear, mastery of fear, not absence of fear.”
I believe that this portrays what courage truly means. It is a combination of never giving up a struggle and never losing hope in what you are fighting for. I was born with a heart defect that required me to have open-heart surgery at Children’s Hospital Colorado when I was 6 weeks old. I went on to make a full recovery. I cannot imagine the courage it took my parents to see me through all of those challenges. Over the past year I have been able to appreciate their courage with a new perspective.
COURAGE THROUGH THEIR
EYES
What Courage Means to Me by Noah Devolve
Fourteen-year-old Noah Devolve received a life-saving open heart surgery as an infant at Children’s Hospital Colorado. More recently, he had to undergo multiple surgeries at the hospital’s Orthopedics Institute. We asked Noah, What does courage mean to you?
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Less than a year ago, my family and I were faced with a difficult decision. I had been very “knockkneed” for as long as I can remember, and I began experiencing daily pain when I was 12 years old. We consulted with Dr. Frank Chang at Children’s Colorado, and after an intensive clinical visit, he gave us two options. The first was to try physical therapy and see if that would realign my joints over time. The other was to have surgery. Plates and screws would be inserted in both knees and ankles to prevent the inside of the bones from growing. Once I had grown enough to correct the alignment, the plates and screws would come out. This option would mean at least two, but perhaps as many as five, surgeries over the next few years. We had to make the decision immediately because of my age; the surgery would not be effective once my growth plates had fused. It took a lot of courage to make the decision to go into surgery. The plates and screws went in last May, but already they have been removed from three sites, and my knees feel so much better! Courage is making the difficult, scary, and sometimes painful decision because it is the right one. This is what courage means to me.
Look for our next issue and learn why 1-year-old Juniper has so many reasons to celebrate. | Spring 2015
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NON-PROFIT ORG U.S. POSTAGE PAID DENVER, CO PERMIT No. 3978
Anschutz Medical Campus 13123 East 16th Ave., Box 045 Aurora, CO 80045
Children’s Hospital Colorado Foundation is proud to present
Read more inside about how we’re harnessing our history and strengths to make transformative changes for children’s health
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www.courageis.org www.childrenscoloradofoundation.org Health Elevations | The Journal of the Colorado Health Foundation
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