Children's View Summer 2012

Summer 2012

Children’s

50anniversary th

of the

also inside

NICU

A Lifesaving Journey for Twin Brothers

the view from here Birthdays are some of the happiest moments in childhood. This year, we at CHOP are celebrating a birthday of our own as the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit turns 50.

Today, we take for granted that hospitals have a special unit dedicated to critically ill infants, but in the 1960s, N/IICUs were a cutting-edge idea. CHOP was a pioneer in the field, and through the decades our research has helped clinicians worldwide learn how to better care for neonates. We are proud that our

Officers

Board of Trustees

Mortimer J. Buckley Chairman

N. Scott Adzick, M.D., M.M.M. • Steven M. Altschuler, M.D. • Clark Hooper Baruch • A. Lorris Betz, M.D., Ph.D. • Fred N. Biesecker • Aminta Hawkins Breaux, Ph.D. • Mortimer J. Buckley • Stephen B. Burke • Dominic J. Caruso • Alan R. Cohen, M.D. • Tristram C. Colket, Jr. • Arthur Dantchik • Mark Denneen • Mark Fishman • Lynne L. Garbose, Esq. • Anthony A. Latini • James L. McCabe • John Milligan, C.P.A. • Asuka Nakahara • Jeffrey E. Perelman • R. Anderson Pew • Gerald D. Quill • Daniel T. Roble • David B. Rubenstein • Anne Faulkner Schoemaker • Salem D. Shuchman • Binney Wietlisbach • Nancy Wolfson • Dirk E. Ziff

Mark Fishman Vice Chairman Tristram C. Colket, Jr., R. Anderson Pew Honorary Vice Chairmen Steven M. Altschuler, M.D. Chief Executive Officer Aminta Hawkins Breaux, Ph.D. Secretary Anthony A. Latini Treasurer

Division of Neonatology is ranked among the best in the nation,

Thomas J. Todorow Assistant Treasurer

and hope you enjoy learning more about the N/IICU and its

Jeffrey D. Kahn, Esq. General Counsel & Assistant Secretary

patients in this issue.

As you flip through the pages, you might notice an updated

Ex-Officio

Tami Benton, M.D. • David Cohen, M.D. • Jeffrey A. Fine, Psy.D. • Kathleen Chavanu Gorman, M.S.N., R.N. • William J. Greeley, M.D., M.B.A. • Diego Jaramillo, M.D., M.P.H. Emeritus

Leonard Abramson • Willard Boothby • Ruth M. Colket • Armin C. Frank • Peter C. Morse • George Reath Jr. • Stuart T. Saunders Jr., Esq. • Richard D. Wood Jr.

Margaret M. Jones Assistant Secretary

look for Children’s View. Please email givehope@email.chop.edu, and let us know what you think. As always, the magazine will continue to bring you inspiring and touching stories of CHOP

Children’s

patients like Xavier Ross (Page 16), Kyle and Andrew Malmstrom (Page 18) and Steven Huang (Page 20).

Your contributions to Children’s Hospital keep us at the forefront of pediatric medicine, allowing us to dive into new

Executive VP & Chief Development Officer

Stuart Sullivan Assistant VP, Communications & Donor Relations

research and start new clinical programs — as we did with the

Mark Turbiville

N/IICU in 1962 — that help countless children.

Julie Sloane

Thank you for helping our patients celebrate many more

Editor

Writers

Sara Barton Louis Bell, M.D. Zan Hale Mark Jolly-Van Bodegraven Eugene Myers Abny Santicola Jessa Stephens Tyler Weaver Photography

Ed Cunicelli Kevin Monko Andy Todes Design

SwivelStudios, Inc.

Children’s View is produced

by The Children’s Hospital of Philadelphia Foundation.

Comments and inquiries should be addressed to:

The Children’s Hospital of Philadelphia Foundation 34th Street and Civic Center Boulevard Philadelphia, PA 19104-4399 givehope@email.chop.edu For information about making a contribution to support CHOP, call 267-426-6500 or visit GiftofChildhood.org.

Printed by

Production

happy birthdays.

Kimberly Caulfield Nicole Keane

Steven M. Altschuler, M.D. Chief Executive Officer

LLC

Founded in 1855, The Children’s Hospital of Philadelphia is the birthplace of pediatric medicine in America. Throughout its history, a passionate spirit of innovation has driven this renowned institution to pursue scientific discovery, establish the highest standards of patient care, train future leaders in pediatrics and advocate for children’s health. A haven of hope for children and families worldwide, CHOP is a nonprofit charitable organization that relies on the generous support of its donors to continue to set the global standard for pediatric care.

© 2012 The Children’s Hospital of Philadelphia, All Rights Reserved.

8

Children’s

cover story Baby Steps, Big Milestones The Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit celebrates its 50th anniversary.

An artist-in-residence gives

The rooftop Sea Garden opens at Children’s Seashore House.

cancer patients a creative outlet.

2

Today@CHOP CHOP’s travel TV show, teen driver safety advice and more

First-time parents find hope for their baby’s heart at CHOP.

18

20

22

A twin-to-twin bone marrow transplant for aplastic anemia

A healthy start in America for a boy with Gaucher disease

A season of fabulous fundraising events

Blood Brothers

ON THE COVER: Anna, 2 months, in the N/IICU

From China to CHOP

Volunteers in Philanthropy

today@CHOP Around THE World IN

60 Minutes

Every Tuesday and Thursday, volunteer Justin Gelzhiser takes Children’s Hospital patients on a world tour.

Justin Gelzhiser (top, and above on-camera with Aungelee, 9, and Sean, 7) brings flags, international clothing and props like a lion-dog figurine from Okinawa, Japan (above right), and foreign currency (below). His show’s mascot, a Chinese plush turtle named Kame-chan (left), appears regularly.

2 | Children’s vIew | Summer 2012

They’ve been to Japan, China, Brazil, Egypt, England, India, Namibia, Australia and Guatemala — without ever getting out of bed.

Patients watch him on Galaxy 51, CHOP’s in-house TV channel, as he broadcasts from THE VOICE studio in the Colket Atrium.

“I love seeing the world come alive through a patient’s eyes,” says Gelzhiser, a graduate student at the University of Pennsylvania who has taught in elementary schools in Japan, South Africa and Costa Rica. “The places we ‘visit’ go from being abstract points on a map to tangible places they can experience.”

Gelzhiser often brings in international guests from each show’s featured country.

They initially keep the country a secret — giving clues like showing the flag, teaching a few words in the native language or talking about the climate — and encourage patients to call in from their rooms with a guess. Once the mystery is solved, they share more information about that country’s music, customs, historical figures, sports and food and show any mementos they brought to the studio. Green screen technology, recently purchased thanks to a gift from Jacob and Kristina Brodie, will allow Gelzhiser and guests to superimpose themselves over images and video from around the globe.

“It’s fun,” says Gelzhiser, a high-energy 28-year-old who is a thesis away from a master’s degree in intercultural communication.

“For me, it’s the best way to combine volunteering at CHOP, my previous international experiences and my studies at Penn into one platform.”

In one particularly ambitious show, Gelzhiser used Skype to beam the show live from China, where he was visiting. He walked the streets of rural Yunnan province in southern China with his laptop camera beaming the scenes back to Philadelphia as children called in questions from their beds at CHOP. “I want kids to feel like they leave their rooms and travel the world with me,” he says.—ZAN HALE

today@CHOP my CHOP hero

Craig Alter, M.D.

Pediatric Endocrinologist on CHOP faculty since 1999

“The first time we visited the Endocrinology department at CHOP, my daughter’s growth was not even close to the ‘normal’ range and my husband and I were very nervous. After a few minutes in the exam room, Dr. Alter walked in with a wide smile on his face and a Mickey Mouse tie around his neck.

He held out his hand and greeted my daughter. Instantly, all of our apprehension disappeared.

Now, after many years of follow-up visits, we have gotten to know him and respect him even more. His methodical approach to my daughter’s treatment is what we admire the most. We know that his decisions are always made after careful thought, research and discussion. Although my daughter’s main concern is still wondering what tie Dr. Alter will be wearing that day!”

— S t e pha n i e , moth e r of M add y, 1 2

To honor a CHOP employee who has gone above and beyond for your family, go to giftofchildhood.org/myhero.

Teens Rock Out

CHOP

When Peter Barkman, full-time businessman and part-time drummer for the rock band Jung Wombats, looked out over the sea of teens and tweens in CHOP’s Main Café, he saw kids rocking out and having a good time.

At the Battle of the Bands, held the evening of March 29, patients could be just like any other kids — hanging out with friends, dancing to live music, cheering for their favorite bands. “It’s an opportunity for them to put whatever is ailing them on the shelf for a while and escape,” says Barkman, whose daughter Lauren was successfully treated at CHOP for acute

lymphoblastic leukemia. “Our goal is to take them on a musical journey.”

Jung Wombats was one of four bands and a solo act that competed that night. It’s Always Sunny in Sedation, a group of musical nurses, physicians and other staff, largely from the Sedation Unit, got together especially for this year’s Battle of the Bands. But it was Gypsy Wisdom, a Philadelphia cover band, that earned a trophy as the winning band. Then all the kids crowded onto the stage for the encore and joined in singing Adele’s “Set Fire to the Rain.” —Zan Hale

Above: Battle of the Bands’ patient-crafted trophies Summer 2012 | Children’s view | 3

today@CHOP

Jessie Boyko’s cart is stocked with acrylics, tempera, watercolor, oils, crayons, pencils and metallic paper. On Mondays, she pushes it from room to room in the oncology units at The Children’s Hospital of Philadelphia as its artist-in-residence.

She sits with patients from 3-year-olds to young adults. The kids talk about dragons, the beach, pets, hobbies, fishing, home. Boyko talks about textures, shapes, colors, printmaking, the great

4 | Children’s vIew | Summer 2012

artists. Nobody talks about cancer.

Boyko, who has a master’s degree in fine arts and teaches at Moore College of Art & Design, will spend up to two hours with each child. The time passes quickly as the kids escape into their imaginations and creativity. They laugh. They learn.

The Artist-in-Residence program is funded by LIVESTRONG, the Lance Armstrong Foundation, and a private donor. Since it began last year, it has brought joy to hundreds of cancer patients.

“The need and the want and the desire to create are there,” Boyko says. “Those hours of talking and working, those are moments where —SARA BARTON they’re able to be kids.”

kids in the hall

We walked the halls of CHOP and asked patients the same question:

“What do you want to be when you grow up?”

Helping Refugees Start New Lives

To get to CHOP, the Gurungs traveled farther than most families — more than 7,000 miles. After 20 years in a Nepalese refugee camp, hoping to return to their home in Bhutan, Shankar and Mani Kumari Gurung volunteered to resettle in the United States so that their three children, who were all born in the camp, could have better schooling and healthcare.

The Gurungs are three of the 70 children whom CHOP’s Refugee Health Program cared for in its first year. Seventy-five percent were Bhutanese, while others hailed from Burma, Iraq and Sudan.

The clinic screens the children and begins treatment for problems ranging from tuberculosis to parasitic infections to vitamin deficiencies.

“For many kids, this is their first real comprehensive physical,” says Mary Fabio, M.D., who is co-director of the program with Khoi Dang, M.D. “They have no concept of a primary care visit.”

Six months after arriving in the U.S., Shankar has a job and his older son and daughter are enjoying their new school and making friends. For medical care, they have been transitioned to CHOP’s Primary Care Center in South Philadelphia.

When the Gurung family is asked about their new life, an interpreter translates: “Whatever they have dreamed about Philadelphia, they have found that it is much better.”

—Eugene Myers

Shankar and Mani Kumari Gurung (seated) with son Ajay, 14, daughter Deoki, 16, and son Seesom, 3

Summer 2012 | Children’s view | 5

quiz

Clean&Green

You know CHOP is the best pediatric hospital — but did you know it’s also one of the greenest? Through its EcoCHOP sustainability program, the Hospital recycles items from 28 categories, everything from light bulbs to laptops.

Before you recycle this magazine, see if you can answer the following questions:

2

A. B. C. D.

10% 29% 38% 55%

The total weight of CHOP’s 2011 recycling would equal how many 14-ton recycling trucks?

A. B. C. D.

3 4

25 52 73 113

When the sun is shining and the weather is warm, it’s no fun for kids to be stuck inside a hospital. So CHOP has brought the fun of playing outside to its patients with the new Sea Garden on the third-floor deck of Children’s Seashore House.

The Sea Garden is both fun and functional. It is a play space, a venue for physical and occupational therapy sessions and a place to rest and connect with nature, all designed with different ages and abilities in mind. A variety of programming will engage patients: Art therapists on the Child life team will

How many pounds of cardboard and paper are recycled at CHOP each month?

A. B. C. D.

79,000 92,000 116,000 137,000

5

Each month, CHOP’s main cafeteria collects how many tons of food garbage for compost?

A. B. C. D.

Which of the following items are not recycled at CHOP? A. B. C. D.

1 2.5 3.5 4.5 —TYLER WEAVER

Diapers Kitchen grease Printer cartridges Batteries

use the garden as inspiration. Various staff and volunteers will teach children about flowers, plants, nutrition and the environment. In the future, the garden may even provide food for children to sample.

Landscape designers at Groundswell Design Group in Hopewell, N.J., donated their services to create the Sea Garden, whose motto is “Hope Blooms Here,” and the Pennsylvania Horticultural Society will help maintain the garden. Many of the plants that fill the garden were also donated by local nurseries. – MARK JOLLY-VAN BODEGRAVEN

Hope Blooms Here Pennsylvania Horticultural Society project manager Julie Snell helps Eoin, 4, plant beans and lettuce.

For more information on the Sea Garden, please visit giftofchildhood.org/garden.

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Answers: 1) D, 2) D, 3) C, 4) A, 5) D

1

What percentage of its waste does CHOP currently recycle?

ask Dr. Bell

Protecting Teen Drivers Louis Bell, M.D., chief of the Division of General Pediatrics at CHOP, explains the latest in medical thinking on an important topic: teen driver safety.

BY LOUIS BELL, M.D.

With vacations upon us, many new teen drivers will be taking to the road, heading to summer jobs or hanging out with friends. Parents are right to be nervous: The highest lifetime risk of an accident happens when new drivers are behind the wheel without adult supervision. The good news is that there are many things a parent can do to keep teen drivers on course.

Cellphones, texting and distraction from passengers are rightly seen as risk factors for an accident, no matter what your age, but studies from my colleagues at CHOP’s Center for Injury Research and Prevention (CIRP) show that for teen drivers, something simpler is at the root of many accidents: inexperience.

demonstrate that teens who say their parents monitor their driving have half the crash risk of teens with permissive parents who are less involved.

As an experienced adult driver, you must continue practicing with your teen in a variety of situations, even after he or she has a license.

Gradually advance teen drivers from low-risk situations, such as familiar one-lane roads in the daytime, to higher-risk conditions like highways and night driving. As the teen demonstrates maturity and develops good judgment, allow him or her more driving privileges.

CIRP also advises that teen drivers avoid riding with anyone other than experienced adults in their first six months behind the wheel, when they’re at their greatest risk of a crash. In my experience as a father of seven, the highest risk with brand-new drivers is driving with friends in unfamiliar areas.

Safe driving behavior is one of the most important health behaviors a teen can adopt. Teens don’t have to be in an accident to learn how to avoid one — they simply need to be prepared, in body and mind, to drive well.

Passing the driving test doesn’t mean the teen is an experienced driver.

Driving is complicated and requires higher order skills, which new drivers have to develop, such as scanning around the vehicle for hazards. Teens need a lot of supervised driving time with an adult, even after passing a driving test. And once they are driving on their own, it’s vital to set driving ground rules as a family — making clear these are for safety, not out of a desire to control the teen — and get buy-in from teens to follow them.

Passing the driving test doesn’t mean the teen is an experienced driver, says Flaura Winston, M.D., founder and scientific co-director of CIRP and an expert in teen driving safety. Her team found that teens have the lowest lifetime risk of being in a crash while driving with their parents and that families are not practicing for long enough and in enough situations to give teens a firm driving foundation. Families are important: Studies at CIRP, funded in large part by State Farm,

To learn more about teen driving from the Center for Injury Research and Prevention, please visit teendriversource.org.

Summer 2012 | Children’s vIew | 7

Baby Steps, Celebrating 50 years of caring for our smallest patients

Big Milestones

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cover story

BY JULIE SLOANE

aring for a criti critically ill newborn is a delicate ba balancing act. The ventilators that deliver lifesaving oxygen can damage fragile lungs.

The food necessary for growth can harm a preemie’s digestive system.

The life-sustaining nutrients and medication lines that feed into an infant’s arms and legs create a risk for infection. It’s a fine line between “too much” and “not enough” of anything in a tiny baby.

Many babies in the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit were born too soon — some as early as 22 weeks, the very minimum threshold for survival — while others have rare disorders or congenital anomalies. As the N/IICU staff works to give them the best chance at a normal life, the infants’ parents endure weeks and months of waiting, worrying, hoping.

This year marks the 50th anniversary of the N/IICU, and it has come a long way since CHOP Surgeon-in-Chief C. Everett Koop, M.D., opened the oneroom, 12-bed unit in 1962. Today it can house as many as 83 infants at a time — around 1,200 a year — with a range of lifesaving technologies unimaginable in the 1960s.

CHOP’s Division of Neonatology is ranked among the best in the nation and, accordingly, its N/IICU draws the very sickest babies from around the region. Aside from the 15 percent who were diagnosed with birth defects prenatally and born in CHOP’s Garbose Family Special Delivery Unit, the babies are all transported from other hospitals. To the credit of the 35 attending physicians, 307 nurses and 63 other staff, the vast majority of them survive.

“Many nurseries can take care of a preterm baby just fine, but when there

C. Everett Koop, M.D., and a nurse care for one of the first N/IICU babies in the 1960s.

Anna, 2 months, was the only survivor among premature triplets.

Summer 2012

| Children’s vIew | 9

40-year N/IICU veteran Bill Fox, M.D. Liam, 6 months (top); Cailin Connelly, R.N., herself once a CHOP N/IICU patient, helps Jaden, 3 months, and his mother (bottom).

A group of surgeons, doctors and nurses hovered around Katelyn Farrell, a day-old newborn who was barely clinging to life, working quickly to hook her up to the contraption they hoped would save her. As the girl’s condition worsened, the lead surgeon made the final connections and switched on the machine.

lungs when the baby’s own are failing. It is one of the key technologies that has helped improve the care of gravely ill newborns over the last 20 years.

“What is that? What are they doing?”

Michele Rupert wondered when she first saw her little girl amid a frightening network of tubes and wires, surrounded

are complications, they send the babies to CHOP,” says Phyllis Dennery, M.D., division chief of Neonatology. “We have all the pediatric subspecialties and specialized technologies that allow us to take care to the next level.”

Bill Fox, M.D., was hired in 1973 as one of the first neonatologists at CHOP and is still with the N/IICU today. The care is constantly improving, he says, because the staff is encouraged to debate and discuss each patient’s case.

“Many of our babies have such complicated problems that there’s no rule book for how to treat them,” he says.

rushed to CHOP within hours of birth for surgery to correct a congenital defect, ECMO is the last hope for survival. It isn’t a cure but a temporary measure to bypass the heart and lungs, allowing them to rest, recover and strengthen.

It worked for Katelyn. Within a couple of days, she had stabilized enough to be

A Pioneering

Neonate Turns 21 Katelyn as an infant with her mother and uncle (left and center), and today (right).

A great cheer went up as Katelyn’s skin went from sickly purple to healthy pink.

Katelyn was out of immediate danger and the ECMO program at CHOP had officially begun.

On May 8, 1990, Katelyn became the first baby at Children’s Hospital to benefit from Extracorporeal Membrane Oxygenation (ECMO), a machine that essentially does the work of the heart and

by doctors and machinery. But Michele trusted that her baby was in good hands.

At the time, ECMO was a relatively new therapy; it had only been approved at CHOP a month before Katelyn’s arrival.

Today, nearly 1,000 children have received ECMO at CHOP — about 50 each year — making it one of the most active programs in the country.

For many babies like Katelyn, who was

10 | Children’s vIew | Summer 2012

taken off ECMO, and she went home within a month. Michele remembers it as the most stressful time of her life, but today her daughter shrugs it off.

Though Katelyn remembers nothing of her ordeal, she has embarked on a career helping children too, working in day care while she earns a teaching degree. “She’s amazing now, a typical 21-year-old,” —EUGENE MYERS says her mom.

cover story

“Many of our babies have such complicated problems that there’s no rule book for how to treat them.”

“Having a whole team of experienced neonatologists weighing in on every patient makes the care that much better.”

The nurse-to-patient ratio in the N/IICU is 1-to-2 or even 1-to-1, ensuring that there is always a watchful eye on the infants’ precarious health. It also gives nurses a special bond with many families.

CONTINUED ON PAGE 14

Mom Stacey Julien keeps watch over Myla, 2 months.

CHOP’s Smallest Patient Little Myla weighs less than 3 pounds. As she lies sleeping in her incubator in CHOP’s N/IICU, a respirator and cardiac monitor whir and light up her otherwise dark, cocoon-like room.

Stickers on her chest and wrists monitor her heart rate, breathing rate and oxygen, and there is an IV to feed her. When her mother strokes her tiny hand and murmurs, “My miracle baby,” Myla stirs, acknowledging her familiar sound and touch. It’s an emotional moment for a family that has been through so much.

In February, Myla and her twin brother, Jules, were born at Pennsylvania Hospital after 23 weeks of gestation, little more than halfway through a typical pregnancy. Each about the size of an adult hand, they weighed less than 2 pounds combined.

Their skin was thinner than tissue paper and their inner organs even more fragile.

“The likelihood of survival of babies born at such a degree of prematurity is less than 20 percent,” says Kelly Wade, M.D., Ph.D., CHOP attending neonatologist.

Wade and the other CHOP physicians who operate Pennsylvania Hospital’s Newborn Care immediately placed them on life support and tried every possible medical intervention.

But only six days after birth, Jules passed away. A day later, Myla took a turn for the worse. An infection in her delicate intestine swelled her stomach like a balloon. The neonatal surgical team at CHOP was her only hope for survival.

When Myla was transported to CHOP, she was the smallest baby in the N/IICU. Five days later she underwent surgery. A second surgery is now needed, but surgeons feel the risks are too high at her small size. So the N/IICU and surgical team — and her family — wait and hope for her to grow stronger.

The neonatal team has supported the family every step of the way. The team put together a scrapbook dedicated to Jules, and they’ve encouraged the family to be equal partners in Myla’s care.

Her mother, Stacey, a registered nurse, has been able to stay in one of the N/IICU’s overnight sleep rooms every night, and she assists the care team in whatever way she can.

A month after Myla was born, Stacey was finally able to hold her for the first time.

“Now I get to kiss her head,” she says. “I like that part. It’s the best thing in life.”

—ABNY SANTICOLA Summer 2012 | Children’s vIew | 11

Running and Laughing In her red-and-white polka-dot dress, 3-year-old Isabella Schneeman elicits more than one “awww” from strangers as she smiles for the camera outside the N/IICU. A flesh-colored bandage covers a small opening in her throat, the only visible reminder of all that Isabella went through in her time behind its doors.

Born at 25 weeks near their home in Clayton, N.J., Isabella and her twin sister, Brooke, struggled to breathe, their airways not yet fully developed. When the babies’ health worsened, their parents, Libby and David, knew exactly where to take them — Libby has been an ultrasound technician at CHOP for nine years.

Sadly, as CHOP transport came to get the twins in August 2008, Brooke passed away. Doctors in CHOP’s Neonatal Airway Program worried about Isabella’s airway; she relied completely on a ventilator to stay alive.

Isabella, 3

Saving Savaughn There are plenty of chairs at VMS Movement Specialists, a Newtown, Pa., gym their parents own, but identical twins Savion and Savaughn, 11, would rather squeeze side-by-side in the same chair than sit separately. As they sit and read, you can only tell them apart because Savaughn is about three inches shorter and has a four-inch scar

Comcast’s “Postgame Live” show when he and his wife, Kim, learned they would be having twins.

At five months, when most parents discover their baby’s sex, the Hebrons were instead dealt a blow. Tests revealed the babies had a life-threatening condition called twin-twin transfusion syndrome (TTTS), in which one twin gets too much blood, oxygen and nutrients, while the other twin doesn’t get enough.

“They told us there was a 70 percent chance one or both wouldn’t make it,” says Vaughn.

At 32 weeks, one twin’s heart rate became erratic, and doctors at their local hospital ordered an emergency c-section. Savion weighed 3 pounds,

“They gave me a Polaroid of Savaughn and said I should say goodbye.” across his stomach — a reminder of the miracle that they are both here, together, and healthy today.

In 2000, their father, Vaughn Hebron, retired from the NFL. He’d been a fan favorite on the Philadelphia Eagles and earned two Super Bowl rings in Denver, where he was the Broncos’ all-time leading kickreturner. He was about to start work as an analyst on 12 | Children’s vIew | Summer 2012

7 ounces, and Savaughn, just 2 pounds, 9 ounces.

By evening, Savaughn’s skin had turned ashen and his stomach was distended. Unsure of the problem, doctors advised the couple to send him to CHOP. “They gave me a Polaroid of Savaughn and said I should say goodbye,” remembers Kim with tears in her eyes.

cover story Her parents hoped to avoid a tracheostomy, an incision in the throat to make a new airway, which requires years of constant monitoring and suctioning to keep the airway clear and prevents the child from speaking.

The following December, Isabella managed to dislodge her own breathing tube. Doctors kept her alive with chest compressions as they worked to replace it. They succeeded, but only with great difficulty. Isabella’s airway was critical: underdeveloped, scarred and collapsing. A tracheostomy was now her only option.

Ian Jacobs, M.D., surgical director of the Neonatal Airway Program, and neonatologist Janet Lioy, M.D., planned the procedure before Jacobs operated.

Isabella went home for the first time in March 2009, with a ventilator to force air through her tracheostomy into her lungs to

Isabella at 12 months and as a newborn (below)

Watching her run and laugh, you would never know how desperately she once struggled for air.

At CHOP, Savaughn was diagnosed with necrotizing enterocolitis, a condition not uncommon in premature infants where portions of bowel tissue decay. CHOP surgeons immediately removed three inches of his intestine. The procedure was a success.

Vaughn was at Savaughn’s side in the N/IICU every day for the next three months of recovery. “I’d go from CHOP to the studio, tape ‘Postgame Live,’ then go back to CHOP,” he says.

“You’re going through this time of trauma, and they made it so comfortable, so easy. I’d come in, and it felt like I was coming into the locker room. It was like a second home.”

“The nurses in the N/IICU were amazing,” says Kim. “They dotted every i and crossed every t, leaving nothing to question. They were so good to us, and for Savaughn to come home healthy, all I can feel is blessed.”

Finished reading now, the boys run around the gym. Savion pretends to box; Savaughn does a pullup. They breakdance to a song only they seem to hear.

“They’re quite the characters,” says Kim, “but they love to be together. It’s amazing to watch.”

—Mark Turbiville

ensure that she would get enough oxygen.

“I never thought about it as something unusual,” Libby says. “She was our firstborn and she came with all this equipment, just something we loaded up in the car to take her to Target or to the zoo.”

CHOP’s Home Ventilation Program made monthly visits to the Schneemans’ home to check on Isabella’s breathing equipment and provided support around the clock. Her doctors closely monitored her tracheostomy and growing airway.

Jacobs surgically reconstructed Isabella’s throat last June, and her tracheostomy tube was removed in September. She is eating, growing and singing like any other little girl. Watching her run and laugh, you would never know how desperately she once struggled for air.

“She’s running out of the N/IICU,” says Libby, smiling. “That’s awfully appropriate.”

—Eugene Myers

Opposite: The twins at 7 months

(top) and Vaughn and newborn Savaughn in the N/IICU (bottom) This page: Vaughn and Kim

Hebron with identical twins Savaughn (left) and Savion, 11

Summer 2012 | Children’s view | 13

cover story CONTINUED FROM PAGE 11

“When the babies come to the N/IICU, we always tell the parents their course is going to be like a roller coaster,” says Peggy Nelson, R.N.C., who has been caring for CHOP’s infant patients for 33 years. “We encourage them to take it one day at a time.”

To help these families, a psychosocial program supported by the Neubauer Family Foundation helps parents bond with their children and keep spirits up through months of stressful uncertainty.

Many of the N/IICU’s physicians, including Dennery and Fox, are also researchers, studying areas such as the long-term consequences of being born premature, less-damaging ways

Encouraging Family Bonding Thinking back on her daughter Charlotte’s three-month stay in the N/IICU, Lindsay Groff recalls how powerless she felt. “You feel like the doctors and nurses are helping to heal her, but you’re just sitting there, helplessly looking at your sick baby,” she remembers.

A routine ultrasound before birth diagnosed Charlotte with giant omphalocele, a life-threatening condition in which her abdominal organs were outside of her body. The team at CHOP’s Center for Fetal Diagnosis and Treatment prepared Lindsay for what the diagnosis meant: Immediately after birth, Charlotte would quickly be whisked away to undergo the first of many surgeries, and she would be in the N/IICU for weeks, until all of her surgical wounds healed.

The news was devastating. But the team gave her hope and worked to involve her in Charlotte’s care.

From the start, the nurses, doctors and lactation consultants encouraged Lindsay to breastfeed as a way to help Charlotte grow stronger.

“Breast milk is optimal nutrition for the baby, especially babies with gastrointestinal problems,” says Rosario Wessner, R.N.C., N/IICU nurse and Breastfeeding Committee chair, who leads a breast pumping support group at CHOP. “We use breast milk as a kind of medical intervention, and at the same time it allows families to contribute to their

The original N/IICU in the early 1970s Division Chief Phyllis Dennery, M.D., examines Keith, 7 months. to deliver oxygen and the effect of light on neonates.

In fact, CHOP has long been at the forefront of neonatology; the modern incubator, the Isolette, was invented at CHOP in 1938 and stood for 50 years as the industry standard.

CHOP’s neonatologists are also great collaborators.

Many of the division’s programs, such as the Newborn and Infant Chronic Lung Disease Program and Neonatal Airway Program, incorporate staff from Pulmonary Medicine, Otolaryngology, Rehabilitation and Surgery. Over the decades, the division’s expert neonatologists also have branched out to other local

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After three weeks in the N/IICU, when Charlotte was finally stable enough to be held, the N/IICU team taught Lindsay “kangaroo care,” which promotes motherchild bonding through skin-to-skin contact.

Charlotte, 1 month, and Lindsay practice kangaroo care (above left). Mother and daughter today (right).

baby’s care and recovery.”

Immediately after Charlotte was delivered in CHOP’s Garbose Family Special Delivery Unit, Lindsay began pumping her breast milk as instructed. Over the next few weeks, as Charlotte underwent a total of seven surgeries to repair her birth defect, the N/IICU team encouraged Lindsay to clean Charlotte’s mouth with a cotton swab dipped in breast milk, which carries antibodies that would absorb through the baby’s oral cavity and make her stronger.

After three weeks in the N/IICU, when Charlotte was finally stable enough to be held, the N/IICU team taught Lindsay “kangaroo care,” which promotes mother-child bonding

through skin-to-skin contact. When Charlotte finally breastfed for the first time, N/IICU team members cheered and high-fived to celebrate such an important milestone.

“They were genuinely as excited about Charlotte’s eating as our family was,” Lindsay says, holding back tears. “I’ll never forget that.”

Now almost 2, Charlotte is a healthy toddler, and Lindsay credits the neonatal team that supported her with her incredible recovery.

“Most people don’t realize that she was ever sick,” says her mom. “The support of the N/IICU staff during the process was so critical, and I know that it helped her thrive. We are forever grateful to CHOP.” —ABNY SANTICOLA

Luna, 2 weeks hospitals. Today, CHOP Newborn Care runs the intensive care nurseries at 12 local hospitals, including the Hospital of the University of Pennsylvania.

The patients never remember their neonatologists, but the staff loves when they return years later.

“You can’t believe it’s the same person,” says Dennery. “They were a vulnerable little baby, and then they come back as a grown person who can talk and who’s really vibrant. It’s such a wonderful feeling.”

To support the N/IICU and its lifesaving work, please visit giftofchildhood.org/supportNICU.

Summer 2012 | Children’s vIew | 15

First-time parents find hope for their baby’s heart at CHOP

BY JESSA STEPHENS

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OPPOSITE: Xavier is all smiles at 10 months.

j

LEFT: Nate’s tattoo honors his son’s journey (top); Jackie holds Xavier, whose onesie shows a sense of humor (bottom).

ackie Ross was 20 weeks pregnant with her first child when she and her husband, Nate, received the devastating news: The baby they already loved so dearly would be born with half a heart.

“I saw it as a death sentence,” Jackie says. “We went through all the stages of mourning.”

But as she and Nate learned more about their son’s condition, hypoplastic left heart syndrome (HLHS), they found that they had options — good ones. And when they watched a video about CHOP’s Fetal Heart Program, which cares for babies with heart defects while they are still in the womb, Jackie says, “We finally realized that this might all be OK.” Though the couple had the option of going to a top hospital in New York City, they chose CHOP’s Cardiac Center because of its team’s expertise in treating babies with HLHS, a serious heart defect in which the left side of the heart is underdeveloped. And they were thrilled to learn that Jackie could deliver in the Hospital’s Garbose Family Special Delivery Unit (SDU), so she would be just down the hall from her son as he awaited his first open-heart surgery.

“As soon as we walked into the SDU,” Jackie remembers, “I said, ‘This is exactly where we’re supposed to be.’”

Xavier Thomas Ross was born in the SDU on May 28, 2011.

“It was amazing,” Jackie says. “My biggest fear was that it wasn’t going to be like ‘real’ labor because of his heart. But they did everything they could to make it as normal as possible.” Jackie and Nate spent hours cuddling and rocking Xavier. Their families visited.

patients survive, and we’re focused on making sure they have a good quality of life as they grow up.”

Xavier’s surgery went well, and after a month at CHOP, he went home. It was a joyous but nerve-racking time for Jackie and Nate. Xavier needed constant care: changing his feeding tube, monitoring his oxygen levels, weighing him every other day, tracking every milliliter he ate. It was exhausting. And it was very serious work, because babies with HLHS are at especially high risk for complications during the time between their first and second surgeries. It helped that a nurse practitioner from the Cardiac Center called Jackie and Nate every week to track Xavier’s progress and was always available to answer their questions. They had also taken several classes at CHOP to learn how to care for their fragile baby. “I really think that was why he did so well at home,” Jackie says. “I was so prepared.”

Honoring Xavier’s “heart journey” is now a huge part of his parents’ lives. To raise awareness about congenital heart disease, Jackie wears a pendant in the shape of a bandaged, broken heart, and Nate

Honoring Xavier’s “heart journey” is now a huge part of his parents’ lives.

Four days later, Xavier was wheeled to the operating room where J. William Gaynor, M.D., performed the Norwood procedure, the first of the three incredibly complex surgeries required to reconstruct Xavier’s tiny heart. When the surgeries are completed, the right side of Xavier’s heart will be able to pump oxygenated blood to his body — a job normally done by the left side. He will face many challenges, but he is expected to live a full and happy life.

Thirty years ago, his future wouldn’t have been nearly as bright. At that time, many children with heart defects like Xavier’s died within days of birth. “We were basically trying to get the kids to survive — period,” says Gil Wernovsky, M.D., Xavier’s cardiologist at CHOP. “Now, care has advanced to the point that the vast majority of these

appeared on the TV show “NY Ink” to get a tattoo in honor of his son. As for Xavier, he had his second open-heart surgery at CHOP in October, and he’ll have his third sometime in the next few years.

For now, though, this always-smiling survivor is focused on the things he loves most in life: eating, playing with toys, taking baths and going for rides in the car. And during a recent trip to Florida, he experienced many new things. He went to the beach. He went to the zoo. And, for the very first time, he started waving hello.

To learn what you can do to help kids like Xavier, please visit giftofchildhood.org/supportcardiac.

Summer 2012 | Children’s vIew | 17

lood B Brothers By Eug e n e M y e rs

A bone marrow transplant from one twin saves his brother’s life Kyle and Andrew Malmstrom are as close as two brothers can be. The twin 12-year-old boys do everything together.

They have the same blond hair and impish smiles, but genetic testing to see if they truly were identical never seemed important — until Kyle noticed purple dots on his skin last September.

Kyle’s pediatrician told his parents, Kim and Mike, to take him to CHOP immediately, so they drove an hour from their home in Spring City, Pa., to the Emergency Department. “The triage nurses took one look at Kyle and put us immediately into isolation,” Kim says. “Within the hour, hematologists were getting blood work done.”

That blood work revealed that Kyle’s platelet count was only 4,000; the normal range is 150,000 to 450,000. After two bone marrow biopsies, Kyle’s doctors diagnosed him with a severe form of aplastic anemia, a condition so rare it affects only two out of every million people. It meant that Kyle’s bone marrow was no longer making new red and white blood cells and platelets.

“It’s as if the workers have left and you have an empty factory,” explains Nancy Bunin, M.D., director of the Bone Marrow Transplant Program at CHOP. “Red blood cells typically last for two months.

Platelets last six days, and white blood cells last only one day. Without a constant supply of them, you’re at risk for infection, bleeding and developing potentially life-threatening heart problems.”

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Andrew

Kyle

Kyle’s doctors diagnosed him with a severe form of aplastic anemia, a condition so rare it affects only two out of every million people.

Kyle’s best option was a bone marrow transplant from a sibling donor. The odds of an exact sibling match are only 25 percent, but Kyle was very lucky. He had two: his older sister, Amanda, and Andrew. Doctors ultimately chose Andrew and confirmed that the two boys are genetically identical. “I always knew we were!” insisted Kyle.

As an identical twin, Andrew’s fully compatible bone marrow significantly increased the likelihood to better than 95 percent that a transplant would cure Kyle. Andrew was nervous about the procedure but willing to do whatever it took to get Kyle back to normal.

The transplant, performed in October, was CHOP’s first between twins for aplastic anemia, though twin transplants have been done at CHOP in the past to treat leukemia. In a 90-minute surgical procedure, Andrew was placed under general anesthesia while doctors used a special needle to remove a small amount of liquid marrow from his hip bone. For his sacrifice, Andrew suffered nausea from medication and endured two weeks of soreness — a small price to pay for saving his brother’s life.

OPPOSITE: Kyle prepares to receive the infusion of Andrew’s bone marrow

(top). The brothers cheer on the Flyers during Kyle’s hospital stay (middle).

Healthy post-transplant, the twins with their mother, Kim (bottom).

To Kyle, the transplant seemed no different than the weekly platelet infusions he had been getting: After receiving chemotherapy to prepare his body for the transplant, an IV in his arm delivered Andrew’s donated marrow to his blood.

The healthy marrow migrated into Kyle’s bones, which soon began producing healthy blood cells again. He returned to school in April, ending more than seven months of near total isolation from the public — a difficult time for twin brothers who are usually inseparable. But Kyle made the most of it: He became a master bingo player and learned to play guitar through the Music Therapy Program during his month at CHOP. And now that Kyle’s doing well, he and his family have been focusing their energy on making “quillows,” quilts that fold into pillows, to donate to other bone marrow transplant patients at CHOP. Kyle wants the kids there to have the same comforts of home that he had at the Hospital, and to give them the hope of getting better like him.

“We sew strength, courage and hope into each stitch, from one survivor to another,” Kyle says.

For more about the Malmstrom brothers, please visit childrensview.org.

Summer 2012 | Children’s vIew | 19

from AFTER A DIAGNOSIS OF GAUCHER DISEASE, STEVEN HUANG STARTS A HEALTHY NEW LIFE

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China

CHOP to

BY JULIE SLOANE

At the age of 2, Steven Huang’s belly started growing bigger and bigger. His nose bled constantly. When not exhausted, he would stumble around and fall as if drunk.

The local doctor in his native Fuzhou, China, couldn’t make a diagnosis but wanted to remove Steven’s spleen. From her home in Phoenixville, Pa., Steven’s aunt, Diana Huang, shook her head. This was not right. She flew to China and took Steven to a hospital in Hong Kong, where she first heard the words: Gaucher disease.

Gaucher (pronounced “go-SHAY”) is a rare genetic disease that affects the lysosomes, the cells’ garbage recyclers. Gaucher causes an enzyme deficiency that blocks the lysosomes from working properly, leading to symptoms like painful and brittle bones, enlarged liver and spleen, extreme fatigue and easy bleeding.

both children and adults.) By email, Diana began working with Center Director Paige Kaplan, M.B.B.Ch., on Steven’s treatment plan.

After 22 months, the adoption became official, and on July 27, 2011, Steven and his aunt arrived in the U.S. Five days later, he had his first appointment at CHOP. Until he could be covered by Diana’s health insurance, Genzyme donated his medication. Genzyme has also been a great supporter of the Lysosomal Disease Center and Kaplan’s team, physicians Jaya Ganesh, M.B.B.S., M.D., and Can Ficicioglu, M.D., Ph.D., and genetic counselors Kristi Fitzgerald, M.S., C.G.C., Sara Chadwick, M.S., M.P.H., and Colleen Clarke, M.S. The

During Steven’s two- to three-hour infusions, they read books and color.

Steven declares his favorite color to be “red blue purple turquoise hot pink.”

Since 1991, the disease has been treatable with regular enzyme replacement therapy — which can prevent nearly all symptoms if taken before permanent bone damage sets in — but the medication is not readily available in much of Asia.

Steven’s family didn’t need any more bad news.

Steven’s mother and grandmother both had been recently diagnosed with cancer, and his grandfather had passed away. With nobody healthy to care for Steven, Diana had already begun the process to adopt her nephew, whom she had met only twice. Now, this diagnosis brought added urgency. In America, Steven could get medical treatment.

Diana spent eight months running Steven all over Asia — to Taiwan, to South Korea … wherever she could locate the enzyme, which cost the family $10,000 a month.

It was a relief when Diana learned that 45 minutes from her home, the Lysosomal Disease Center at The Children’s Hospital of Philadelphia offers one of the nation’s strongest programs to treat Gaucher disease.

(In fact, as the only program in the region, it treats OPPOSITE:

Diana and Steven Huang (center); genetic counselor Sara Chadwick, M.S., M.P.H. (left), and Paige Kaplan, M.B.B.Ch. (inset) THIS PAGE:

Steven receives his infusion in CHOP’s Day Medicine clinic.

company has given more than $2 million to date to support education, research and fellowships on metabolic disease at CHOP. Over the next five months, Steven had more than 40 appointments at CHOP and received enzyme infusions every two weeks. He has responded beautifully. Steven’s spleen has reduced in size by half, his nose rarely bleeds and he can walk without falling. He has grown several inches and his bone density is improving.

Unfortunately, Steven has type 3 Gaucher disease, a less common, more severe form that could damage his brain.

It is a devastating problem that could show up at any age — or never. So far, he shows no neurologic problems and has wowed Kaplan with his intellect. After three months in the U.S., Steven completely switched to speaking English; within eight months — at the age of 4 — he began to read.

Kaplan hopes that a new medication with molecules small enough to reach the brain, currently in trials at Genzyme, will become available before Steven shows neurologic problems. The doctor smiles warmly as she looks over at Diana and her nephew playing. “She’s so good with him. His progress is really amazing.”

During Steven’s two- to three-hour infusions, they read books and color. Steven declares his favorite color crayon to be “red blue purple turquoise hot pink.”

On a recent call to his mother in China, Steven even offered advice. “He picked up the phone and shouted, ‘Fight cancer!’” Diana says, laughing. “My sister knows her son is in good care now, and it lets her focus on her health.

I’m so glad CHOP is taking care of him now. He is doing so well and growing up so fast.”

To read the story of Amber Mickley, another child living with Gaucher disease, visit childrensview.org.

Summer 2012 | Children’s vIew | 21

volunteers in philanthropy S IG NATU RE EVE NTS

VO LU NT E E R LEADE RS H I P S U M M IT

56 TH

ANNUAL DAISY DAY AY Y LU NC H E O N & FAS H IO N S HOW On May 3, the Daisy Day Luncheon and Fashion Show, the largest annual fundraising event for CHOP, was held at the Hyatt at the Bellevue in Philadelphia. Honorary co-chairs of the event were Helaine and Joseph Banner and Nancy and James Minnick, and the Annenberg Foundation was a presenting sponsor. The event featured keynote speeches from neurosurgeon Phillip Storm, M.D., and neurosurgery patients Jennifer Minnick and Jason Banner. Keren Craig, co-founder of Marchesa, presented the Marchesa Fall 2012 collection, sponsored by Saks Fifth Avenue. This year's event raised more than $1.5 million to benefit the Division of Neurosurgery at CHOP.

H U DDLE U P for AUT IS M

C H I LD H O O D F RI E N DS WI N E TAST I N G & RE C E PT I O N The fifth annual Childhood Friends Wine Tasting, hosted

by Philadelphia magazine with support from PA Wine & Spirits Stores and the Lubert Family Foundation, was held on April 19 at Tendenza in Philadelphia and raised more than $32,000 for programs at CHOP.

22 | Children’s vIew | Summer 2012

On March 31, more than 140 volunteers, Trustees and CHOP leaders gathered for the second annual Volunteer Leadership Summit. The daylong event featured inspiring stories from patients and volunteers and provided attendees with the opportunity to meet, exchange ideas and celebrate everything they do to support the Hospital. Trustee Anne Faulkner Schoemaker presented the 2012 HOPE Award for Distinguished Volunteer Service to Darlene Logan and Judith Royal for their dedication and tireless support of the Sickle Cell Center and the annual Blue Tag Gala.

On April 22, the Philadelphia Eagles and CHOP teamed up to host the third annual Huddle Up for Autism Family Fun and Awareness Day at Lincoln Financial Field. The day drew 5,000 participants and raised $75,000 for the Center for Autism Research.

volunteers in philanthropy C O M M U N ITY EVE NTS WI NT E R 2 0 1 1 - 2 0 1 2

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MCMASTERS PHOTOGRAPHY

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FRIENDS OF CELI Jan. 27 s Knowlton Mansion, Philadelphia s The third annual dinner raised $24,000 for the Center for Autism Research.

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EAISE FAMILY FOUNDATION RALLY FOR RESEARCH Feb. 3 s Adelphia Grand Ballroom, Deptford, N.J. s The buffet dinner and basket auction raised $35,000 for brain tumor research.

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TWEETHEART SOCIAL Feb. 11 s NEST, Philadelphia s The family fun day raised nearly $3,000 to support programs at CHOP and featured pizza making by Chef Marc Vetri.

HEART WEEK Feb. 13–17 s Richard L. Rice Elementary School, Marlton, N.J. s The weeklong school fundraiser collected more than $1,000 to support the Heart Transplantation Program.

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SUNOCO BALLOON CAMPAIGN March 1–31 s Participating Sunoco locations s Sunoco and its customers raised more than $25,000 to benefit Children’s Miracle Network at CHOP.

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ENTERPRISE HOLDINGS FOUNDATION CHECK PRESENTATION March 5 s Springfield Country Club, Springfield, Pa. s At the Credit Unions for Kids chapter meeting, the Enterprise Holdings Foundation presented a check for $5,000 to Children’s Miracle Network at CHOP.

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ANJALI POWER YOGA KARMA CLASS March 17 s Anjali Power Yoga, Westmont, N.J. s Clancey Carle and Cheryl Cucinotta hosted a karma yoga class to collect art supplies and donations for the Child Life, Education and Creative Arts Therapy department.

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SEVENTH ANNUAL MIRIAM QUIGLEY DANCE-A-THON March 17 s St. Katharine of Siena Gym, Wayne, Pa. s The Miriam’s Kids Research Foundation brought 650 people together to raise $35,000 for pediatric brain tumor research.

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SKATE OFF FOR BRENDAN DIXON March 23 s The Skatium, Havertown, Pa. s The ice-skating event raised more than $14,000 to benefit the Center for Pediatric Eosinophilic Disorders at CHOP.

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FRANKFORD CANDY’S SPARE SOME TIME FOR CHARITY March 28 s North Bowl, Philadelphia s The bowling event raised $11,000 for CHOP.

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Summer 2012 | Children’s vIew | 23

volunteers in philanthropy U PC O M I NG EVE NTS

Come out and join the fun with Honorary Chairs Cliff and Kristen Lee!

Sunday, Sept. 30, 2012 Fabulous prizes

Q

Fantastic post-race buffet

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Fun activities for the kids

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Race begins at 8:30 a.m.

www.parkwayrun.org

Hope to see you there!

Sunday, Oct. 7, 2012 s 10 a.m. s Villanova University Stadium s

www.giftofchildhood.org/buddywalk

Planning a CHOP Fundraiser?

Register your event with The Children’s Hospital of Philadelphia Foundation at GiftofChildhood.org or contact the Community Fundraising team at communityfundraising@email.chop.edu or 267-426-6496. We can help you get started and make sure your event is listed on our website.

24 | Children’s vIew | Summer 2012

For details on upcoming events, go to

Let Your Legacy Be the Gift of Childhood Edie

Age 2 | Oncology

Our care, our research, our teaching.

They all rely on gifts from Children’s Hospital supporters, now and in the future.

Many of the most important and enduring gifts to CHOP have been legacy gifts.

Including Children’s Hospital in your will, or as a beneficiary of a retirement plan, is one of the easiest ways to invest in the health and well-being of future generations of children. These gifts won’t affect your current cash flow and may even help reduce taxes for loved ones.

If you have already made a planned gift to CHOP, thank you, and please let us know. We can help you designate your gift to a specific Hospital program, and we’ll invite you to join the Lewis Society, a select group of supporters who have included Children’s Hospital in their plans.

Visit us at giftofchildhood.org/plannedgiving to learn more, or contact Tom Yates, director of planned giving, at 267-426-6472 or yatestg@email.chop.edu.

Gift of Childhood.org/plannedgiving

GiftofChildhood.org

Please recycle. Children’s View is printed on 55 percent recycled paper and 30 percent post-consumer waste paper.

Hope lives here.

Breanna Age 9 | Oncology

Name

Age ? | Oncology

Because our doctors successfully treat the worst childhood diseases.

Because our scientists make discoveries that save kids’ lives.

Because someone like you took a moment to give.