Winter 14 chop web by The Children's Hospital of Philadelphia

Winter 2014

Childrenâ&#x20AC;&#x2122;s

also inside

Healthy Habits for the Holidays

the view from here Staying in a hospital for any length of time is never easy for anyone, but it’s especially hard on children. the hospital takes them out of their home environment, where they can easily see friends and family, play with their own toys and games, go to school and generally experience all the joys

OFFICERS

Mortimer J. Buckley Chairman Mark Fishman Vice Chairman Tristram C. Colket, Jr., R. Anderson Pew Honorary Vice Chairmen

of being a kid. as we approach the holidays, it is a particularly

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

discouraging time for children to be stuck in a hospital bed.

Clark Hooper Baruch Secretary

Providing the world’s best care for children doesn’t just mean healing their bodies. it also means healing their spirits — and the two are deeply connected. although it’s no fun being sick, ChoP has a team dedicated to making hospitalization as much fun as possible, lifting patients’ spirits through the universal languages of childhood: play, music and art. the specialists in the Child life, education and Creative arts therapy department — often called Child life

procedures in age-appropriate ways and distracting them during treatments with enjoyable activities. Child life runs special events year-round, including this month’s Snowﬂake Station, where parents of inpatients can select toys for their kids, free of charge. this issue takes you behind the scenes with our beloved Child life staff (Page 6 ), whose work is funded almost entirely by donations. it also introduces you to a young boy from haiti whose numerous medical problems are treated by our Patrick S. Pasquariello Jr., M.d., diagnostic and Complex Care Center (Page 16 ), and you can read about an important new initiative to expand ChoP’s genetic testing capabilities (Page 18). i wish you and your family very happy holidays and a healthy

D. Shuchman • Kornelis Smit • Joseph St. Geme III, M.D. • Binney Wietlisbach • Nancy Wolfson • Dirk E. Ziff EX-OFFICIO

Anthony A. Latini Treasurer

Paula Agosto, M.S.N., R.N. • Tami Benton, M.D. • Robert Doms, M.D., Ph.D. • Jeffrey A. Fine, Psy.D. • William J. Greeley, M.D., M.B.A. • Diego Jaramillo, M.D., M.P.H. • Ralph Wetmore, M.D.

Thomas J. Todorow Assistant Treasurer

EMERITUS

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

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

Margaret M. Jones Assistant Secretary

Children’s

for short — have the important job of bringing smiles to kids’ faces. they also make children more comfortable by explaining

BOARD OF TRUSTEES N. Scott Adzick, M.D. • Steven M. Altschuler, M.D. • Clark Hooper Baruch • A. Lorris Betz, M.D., Ph.D. • Aminta Hawkins Breaux, Ph.D. • Mortimer J. Buckley • Reid S. Buerger • Dominic J. Caruso • Tristram C. Colket, Jr. • Arthur Dantchik • Mark Denneen • Mark Fishman • Lynne L. Garbose, Esq. • Shirley Hill • David P. Holveck • Anthony A. Latini • Lissa Biesecker Longacre • Sharad Mansukani • James L. McCabe • John Milligan, C.P.A. • Akiko M. Miyashita • Asuka Nakahara • Jeffrey E. Perelman • R. Anderson Pew • Gerald D. Quill • Daniel T. Roble • David B. Rubenstein • Anne Faulkner Schoemaker • Salem

Children’s View is produced by The Children’s Hospital of Philadelphia Foundation. EXECUTIVE VP & CHIEF DEVELOPMENT OFFICER

Stuart Sullivan ASSISTANT VP, COMMUNICATIONS & DONOR RELATIONS

WRITERS

Louis Bell, M.D. Eugene Myers PHOTOGRAPHY

Mark Turbiville

Ed Cunicelli Kevin Monko

EDITOR

DESIGN

Julie Sloane

Kathy Smith PRODUCTION

Kimberly Caulﬁeld Nicole Keane

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

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.

new year!

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

Children’s

6 2

CHOP kids share their favorite part of the holidays.

Today@CHOP

Meet CHOP’s new physicianin-chief, learn about the Poison Control Center at CHOP and more.

cover story

The Smile Specialists

Being in the hospital is tough for a kid, but the staff in the Child Life, Education and Creative Arts Therapy Department is expert in healing children through fun and play.

CHOP’s Security team works hard behind the scenes to keep kids safe.

Vanessa, 12, lives with a difficult autoimmune disease, but the Child Life staff helps her use her creativity to cope.

Born in Haiti, Bryon found a loving family in the U.S. and the medical care he needed at CHOP.

A new initiative is helping unlock the secrets of childrens’ DNA.

A season of fabulous fundraising events

A Complex Journey

Into the Genetic Volunteers Future in Philanthropy

today@CHOP

Who Ya Gonna Call? 1 2

When did the Poison Control Center become part of CHOP? A. 1986 B. 1993 C. 2001 D. 2011 How many calls does the Poison Control Center at CHOP respond to each year? A. 10,000 B. 45,000 C. 67,000 D. 80,000

3 4

What percentage of calls to the Poison Control Center at CHOP concern children under the age of 6? A. 33 percent B. 50 percent C. 66 percent D. 75 percent How many certiﬁed poison control centers are there in the state of Pennsylvania? A. 1 B. 2 C. 5 D. 10

5 6

How many calls does the Poison Control Center at CHOP receive each year about poisonings in adults? A. 12,000 B. 19,000 C. 28,000 D. 35,000 What type of toxicology-trained specialists staff the Poison Control Center at CHOP? A. Nurses B. Pharmacists C. Physicians D. All of the above

kids in the hall

Answers: 1) B, 2) D, 3) B, 4) B, 5) B, 6) D

As children explore the world, inevitably many objects of curiosity end up in their mouths. Common household items like shampoo or nail polish may seem harmless, but used in the wrong way, almost anything can be poisonous. Thankfully when your child swallows something she shouldn’t, help from the Poison Control Center is only a phone call away — and in eastern Pennsylvania and Delaware, the Poison Control Center is staffed entirely by CHOP. Specialists are available 24/7 by calling 1-800-222-1222. How much do you know about the Poison Control Center at CHOP and poison safety?

“Being with my family, because everyone is so funny.”

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

Laila, 10, Patient Sibling

“I love presents. They are fun to get, and I like to give them too.”

Ryan, 9, GI

“Opening your stockings, because there are lots of little things in there, like Legos.”

“Getting presents. I like getting new stuff.”

Carson, 14, GI

Julian, 9, Patient Sibling

“Making snowmen with our big box of snowmen supplies.”

Gia, 7, Oncology/Surgery

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“I like getting toys for Christmas. This year I want Beyblades.”

Hezekiah, 8, Hematology

today@CHOP

Leading the Way

CHOP names new physician-in-chief

On July 1, Joseph W. St. Geme III, M.D., became the ninth physicianin-chief at CHOP, following true giants in medicine. Carrying on a tradition is old hat for St. Geme, a third-generation pediatrician following in the well-respected footsteps of his father and grandfather. St. Geme will oversee almost 1,200 physicians across 19 medical divisions. We spoke with him as he took the reins of the No. 1 department of pediatrics in the country. — Mark Turbiville What brought you to CHOP? It was a difficult decision to leave Duke, where I was very happy and had terrific colleagues, but I trained here as a resident and basically learned how to be a pediatrician at CHOP. I’ve had a loyalty to CHOP ever since. It’s hard to turn down the opportunity to help lead the leading children’s hospital in the country. What is a physician-in-chief? The physician-in-chief is responsible for overall patient care at CHOP, both in the Hospital and in the outpatient setting. While it is an administrative job, I will see some patients. We are all here to provide the best patient care possible, so I think that continuing to see patients, being on the front line, is key to understanding how we are doing, what we’re doing well and where we can improve. You’ve been away from CHOP for 25 years. How is it different now? Oh, gosh! [He laughs.] A lot has happened in the last 25 years. In 1988, the Wood Center was still being built; CHOP was pretty much just the Main Building. Obviously the Wood Center has been completed, the Abramson and Colket buildings have been built, the CHOP Care Network has been developed and the Buerger Center is under construction. The Research Institute is substantially larger. There is such an impressive amount of talent among the faculty at CHOP and an impressive array of programs that are national leaders in their fields.

How is it the same? Dr. Pat [Pasquariello] is still here diagnosing the toughest cases. Of course beyond Dr. Pat, the drive for excellence remains. Will you be pursuing your own research? Yes. My lab is continuing the work that we’ve been doing on understanding how bacterial pathogens cause disease, particularly in children. We have focused on a germ called Haemophilus that is a common cause of respiratory infections like ear infections, lung infections and sinus infections, and more recently on a germ called Kingella that causes bone and joint infections in young children. We want to translate our knowledge of how

these bacteria cause disease into new approaches to antibiotics and development of new vaccines. Why are philanthropic donations so important to the work being done at CHOP? As a leading children’s hospital, I think it’s fair to say that we have a responsibility to society at large. In order for us to do work at the highest level, to rapidly innovate in terms of patient care and to train the next generation of pediatricians, philanthropy is essential. Donors inspire us to dream big and provide the means to make miracles happen.

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today@CHOP

SpoTLIGHT on:

Security To most CHOP visitors, Security ofﬁcers are the men and women in blue uniforms who greet you at the entrances and parking garages, asking to see your ID and giving you directions. But these 89 officers do so much more behind the scenes to keep patients safe. When a fire alarm goes off, whether it’s a real fire or burned popcorn, Security responds instantly. They stand watch over all traumas in the Emergency Department to ensure that no one impedes the patient’s medical care. At times they are called on to safely restrain patients or family members who become a danger to themselves or staff. When children are a witness to or victim of a crime, Security

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coordinates with police and other authorities to manage interviews and make sure evidence is properly handled. Security’s full-time technology manager oversees a network of 700 security cameras, all recording 24/7, and 3,000 card readers that unlock doors for staff. “Just don’t do anything bad and we’ll never be looking at you,” says Director of Security Michael Brooke. “But following an incident, it’s pretty easy to backtrack and understand where people were and what they were doing.” Their most effective weapon? Words. Officers are trained in “verbal judo” to calmly de-escalate situations through conversation — and that works most of the time.

In fact, their way with words is something many families appreciate. Particularly in the quiet overnight hours, many strike up conversations with Security officers. “A lot of our staff develop a rapport with patients and families,” says Matthew Novacich, assistant director of security. “It’s really fulfilling when you get to see a child finally go home.” “You see so much that’s touching and humbling,” says Officer August Seldon. “You see kids who are dealing with a lot, but they always have big smiles on their faces.” “We don’t do direct patient care or research,” says Brooke, “but it’s important to us that in our own way, we can contribute to the overall — JuLIE SLOANE CHOP mission.”

ask Dr. Bell Louis Bell, M.D., chief of the Division of General Pediatrics at CHOP, shares the latest in medical thinking on an important topic: healthy eating. BY LOuIS BELL, M.D.

Planning for a Healthy Holiday Making sure your kids are eating healthy can be a daily challenge, especially for busy parents. But maintaining healthy food habits is even harder when sugary holiday treats pile up. Parties, restaurant meals and vacations present more opportunities for indulging in sweets and overeating; however, if you keep in mind some of the following ideas, you can make sure those special treats stay special and your kids aren’t continuing bad eating habits into the new year. Elizabeth Prout, M.D., attending physician in the Healthy Weight Program at CHOP, explains that she and her colleagues look at eating as a big picture that includes many factors, such as diet, physical activity and screen time — that sedentary time spent watching videos, working on a computer or even texting. Their daily recommendations are easily remembered as 5-2-1-0: five vegetables and fruits (three servings of vegetables and two fruits), no more than two hours of screen time, one hour of physical activity and zero sugared beverages. At holiday time, it’s easy to overdo sweet drinks like soda, punch and high-calorie eggnog. It’s important to distinguish between snacks, which can keep children from getting hungry between meals,

and treats, which is food that they typically don’t get every day. In general, the best practice is to limit treats in frequency and portion, such as once a day and in a portion that’s appropriate for the child’s age; a 6-year-old, for example, shouldn’t be having the same size treat as an adult. Planning ahead and being proactive can go a long way toward maintaining healthy eating habits. If your children are going to a party, don’t send them hungry — give them a healthy snack beforehand so that they’ll be less inclined to go for too much junk food. You can also encourage them to always eat their vegetables first, to meet their basic daily requirements before filling up on other less healthy options. Vacation time can be a great opportunity to increase your child’s physical activity. In the winter, outdoor activities like sledding provide good exercise because sledding down the hill always starts with walking up. Family activities can be more enjoyable, so try walking outside with your kids before or after dinner to keep active. If it’s too cold to spend a lot of time outdoors, there are plenty of indoor activities that kids of all ages can do with you or on their own. Many teens like playing Wii, dancing, hulahooping, jump-roping and weightlifting. You can get creative with younger children, playing tennis with balloons instead of balls, playing hide-and-seek up and down stairs, having them do jumping and squatting games, or pretending to be different animals — exercising their imaginations as well as their bodies. Parents are the biggest influence on a child’s healthy habits, and it’s always a challenge to discipline yourself to model the right behaviors. Setting boundaries and planning in advance, whether it be preparing for holiday parties or vacations, or getting dinners ready ahead of time for the night or the week, can keep your kids following the basics of healthy eating all year round. And remember: Being healthy should be fun!

Vacation time can be a great opportunity to increase your child’s physical activity.

For more of Dr. Bell’s columns, please visit childrensview.org.

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The Smile Specialists BY E u G E N E MYERS A N D J u L I E S L O A N E

Being in the hospital is no fun ... until the Child Life, Education and Creative Arts Therapy Department shows up!

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They are 89 of the most beloved people in all of Children’s Hospital. They are the bearers of toys, art supplies, musical instruments, video games, birthday cakes, holiday gifts and even visiting dogs. The kids know: When someone from Child Life, Education and Creative Arts Therapy shows up, it’s time for some fun. Every unit in the Hospital has its own child life specialists, who have a specialized degree and have passed a national certification exam, and many have child activity coordinators too. They help children cope with illness and hospitalization through play and also explain medical procedures to kids in age-appropriate ways. Other specialized Child Life staff run the art and music therapy programs, the Gerald B. Shreiber Pet Therapy Program, the Hospital School Program, and Seacrest Studios with its Galaxy 51 TV network. Right now, the entire Child Life staff is setting up Snowflake Station, a room filled to the brim with donated toys that will be offered free to patient families whose children can’t celebrate at home. We spent two days observing Child Life staff from nine areas in the Hospital and only scratched the surface of the countless smiles they give patients every single day. We affirmed what CHOP families have told us over and over: Child Life has some of the warmest, kindest, friendliest people on the planet. Health insurance doesn’t pay for patients to have fun at the hospital, so almost all of Child Life’s work is supported by philanthropic donations. To all who have given to all areas of CHOP this year, Jonathan, 11, plays the guitar during a music therapy group.

thank you. These are some of the many beautiful moments you have made possible. Winter 2014

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cover story Pet Therapy

Jakob, 11, and dog Emily When Sherrie Clifford and her dog, Emily, walk into 11-year-old Jakob’s room in the Pediatric Intensive Care unit (PICu), they hit the jackpot: His family is visiting, and Emily couldn’t have found a more appreciative audience. Emily hops up into Jakob’s bed and snuggles next to him as four pairs of child-size hands — belonging to his sister and three cousins — reach out and pet her soft, golden fur. “She doesn’t feel real!” says Jakob’s sister, coincidentally also named Emily. “I want to give her a hug, she’s so soft.” Emily, a 9-year-old Yorkshire terrier–golden retriever mix, is one of 24 dogs in CHOP’s Gerald B. Shreiber Pet Therapy Program, which recently was named thanks to a generous gift from Shreiber, a longtime supporter of the program. It brings certified therapy dogs into the Hospital to comfort kids and help distract them from their illness or treatments. Clifford brings Emily to visit PICu patients on Sundays, and it’s easy to see why families voted her Top CHOP Dog — she prompts smiles wherever she goes. “You’re so cute,” Jakob says. “I love you.” This sentiment is echoed a short while later from another patient, Alex, who has been at CHOP for seven weeks and misses her Yorkie, Paisley, at home. Alex sits up in her bed and smiles when Emily lies beside her. She gently strokes Emily’s fluffy head and murmurs, “I love her.”

Emily visits with Alex, 20

4 East/4 South Kim Sedgwick and Nasir, 5 Child life specialist Kim Sedgwick runs down today’s list of 44 patients in the 4 East/4 South surgical unit. Most are going to surgery soon or are recovering from it. Some have just undergone a trauma or are in pain. Sedgwick’s job is to help kids cope, by both explaining at an age-appropriate level what is going to happen during surgery and often accompanying the child to the OR. Sedgwick joins 5-year-old Nasir on his way to surgery. As he waits in the preop area, Nasir shields his eyes with his forearm, a grimace on his lips. Sedgwick dims the lights in his room and approaches softly. “I have an iPad here. Would you like to play Angry Birds?” Sedgwick offers. Nasir’s eyes peek out. Interested but still upset, he wordlessly chooses the game Fruit Ninja. After a few minutes of play, Sedgwick asks him to take a break. “Can I show you pictures of the room where they’re going to fix your belly?” she asks. Nasir shakes his head no. “Well how about I show your dad,” she says cleverly. She calls up photos on the iPad of the operating room and shows them to both father and son. She points to the IV in Nasir’s hand, telling him, “We’re going to put medicine in there to make sure it won’t hurt. While you’re asleep, we’ll make sure your body doesn’t feel any pain.” Nasir nods slowly and returns to playing his game. But as the minutes pass, frowns give way to smiles. He begins chatting with Sedgwick, then laughing.

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Art therapist Lindsay Ratushny and Marlon, 8

Art Therapy Keke and Jordan struggle to remember the last time they weren’t in pain. For both, it’s been more than five years. Art therapist Sue Worthington-Duffy, M.A., A.T.R.-B.C., asks them to imagine being pain-free and how they might represent that on paper. “I’d probably put a bird flying up free,” says Keke, 11. She flips through magazines, looking for just the right bird to clip out for her wellness book. Keke and Jordan, 15, have endured amplified musculoskeletal pain syndrome, but they are at CHOP for an intensive daily program, lasting weeks, to overcome it with physical therapy complemented by activities like art therapy group. In their wellness books, each child finds artistic ways to express his or her physical, emotional, spiritual and social wellness. “They’re taking an ordinary book and altering it, just as they’re here altering and changing their bodies’ response to pain,” says Worthington-Duffy. While groups are one side of art therapy, other patients have individual sessions. Today, art therapist Lindsay Ratushny, M.A., A.T.R., works with Marlon, 8, who comes for dialysis three times a week. He must sit immobile for hours. Ratushny tells Marlon he is going to write and illustrate a story, and it can be about whatever he wants. Marlon selects a purple marker and begins to create and draw the story of a boy named Rockstar who was at the mall buying groceries, then drives home with his dad. Ratushny smiles when Marlon tells her that at home, Rockstar lives with his two brothers — also named Rockstar — and two sisters, both named Prada. The activity gives Marlon a sense of control and mastery over something, helping him cope with the difficulty of missing school and sitting still. How would Marlon describe his art therapy? “It’s fun,” he says, with a knowing nod. “I like to play games and do art with Miss Lindsay.”

Art therapist Sue Worthington-Duffy and Keke, 11

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cover story Sedation Ten-year-old William sits patiently with his parents, awaiting IV sedation and an MRI. Sedation is common before procedures and scans such as an MRI, and as a child life specialist in Radiology’s Sedation unit, Melanie Hoynoski is there to prepare kids like William on what to expect. Hoynoski pulls up a chair next to William’s bed and chitchats about sports, building up trust with him before introducing a small cloth doll. Together they tie a tourniquet around the doll’s arm. “Do you know why?” she asks. “To make your vein bigger.” Next she lets William smell the alcohol pad before wiping down the doll’s arm. Together, they examine the IV’s “very bendy medicine tube,” and Hoynoski, a nine-year veteran of Child Life, explains how a small needle will help deliver it into the arm but will quickly be discarded. “Does the doll want to watch or look away?” she asks William. “He wants to look away,” William replies. Together, they insert the doll’s IV, remove the needle and tape the line to its arm. Hoynoski shows William how to inject a tube of saline into the IV, which in the real situation will be “sleepy medicine.” He gleefully pushes down on the plunger. Hoynoski assures William he’ll feel sleepy pretty quickly but that his parents will be right there. “Is there anything you feel nervous about?” she asks. “No,” he says with a smile.

Melanie Hoynoski and William, 10

Teaching Program Jamie Johnson reviews an assignment with her students.

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Speech-language pathologist Carlene Koken with Stephanie, 13

The room resembles a typical classroom: Bookshelves line walls decorated with motivational posters (“Never Never Never Ever Give up!”) and assignments are scrawled in marker on a whiteboard at the front. But this classroom isn’t in a school — it’s on the third floor of Children’s Seashore House at CHOP — and its students, Ben, Tyler and Stephanie, are patients recovering from various types of head trauma. “Are we seeing a video?” asks 12-year-old Ben. Jamie Johnson, one of five Hospital School Program teachers, answers yes. He grins and bounces in his seat. That video is about following rules, something that will help the kids when they return to school. The Hospital School Program helps 300 patients each year from kindergarten through 12th grade keep up with their classwork while in the Hospital. Groups like this one, which is held daily, not only provide a structured, safe and supportive environment for kids, but also give a rare opportunity for them to leave their rooms and interact with others. “And we try to have fun,” Johnson says. “That’s the most important. To keep it normal. The normalcy is everything.”

Lyla, 2

Music Therapy Amid the swarm of kids eager to sing and play, music therapist Mike Mahoney, M.A., M.T.-B.C., creates a circle of chairs in the Alex Scott Day Hospital waiting room. He greets kids like old friends: “Hi! It’s so good to see you.” “You’re getting big.” He worked with many of them when they were inpatients, and his music group is a treat when they return for checkups. Mahoney offers up instruments from his cart: maracas, a drum, a keyboard. When the kids have made their selections, he strums his guitar and croons a “Hello” warm-up song. As Mahoney plays and calls out instructions (“Everyone make some sound!”), kids follow along, some shyly, others enthusiastically. And like magic, music happens. Soon, this impromptu band is playing favorites like “I’ve Been Working on the Railroad.” Thea, 6, wanders over with her walker. Mahoney knows her and says “Hi” without missing a beat. “Check out my brand-new walker!” she says. Mike expresses his approval. She rolls the wheels of her walker around to the rhythm — dancing, Thea-style. “I know! Since I got a brand-new walker, let’s sing a song about walkers,” she suggests. “Good idea. I’m in,” Mahoney says. A moment later he improvises a new song just for her: “Walking about /My brand-new walker/I can walk anywhere…” Thea smiles and dances as the other kids pound their drums and piano keys and xylophone.

Music therapist Mike Mahoney

9 South

The 9 South Child Life and Nursing staffs wish Patrick, 6, a happy birthday.

Boredom is Edwina Smith’s enemy, and after five years at CHOP, she is good at chasing it away with her infectious enthusiasm and a playroom full of toys. A child activity coordinator on the 9 South inpatient unit, Smith rounds from room to room, keeping watch for kids who might benefit from a toy or a game. Spying a baby’s crib unadorned, she approaches the mother: “How about a mobile for the crib?” When older kids shrug in indifference, she persists with offerings of movies or video games. “I approach young kids with a toy already in my hand, so they know I’m ready to play,” says Smith. “No ouchies from me!” Life as an inpatient can be hard on kids, and many of the neurology patients on 9 South are being monitored by camera for seizures, meaning that they need to stay put in their rooms. Today is 6-year-old Patrick’s birthday. Smith and the unit’s child life specialist, Samira Moosavi, pull together the nurses to sing him a happy birthday, delivering a cheerful banner and depositing three wrapped presents at the foot of his bed. Patrick is nonverbal but watches them with happy eyes that slowly flutter to sleep. He’ll have presents to admire when he wakes up. Winter 2014

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cover story Seacrest Studios From her bed on 9 South, 13-year-old Olivia needs just one more square to get bingo. “Come on, wash basin!” she pleads with her TV, which is tuned to the Galaxy 51 network, the Hospital’s closed-circuit TV station filmed at Seacrest Studios in the Colket Atrium. Olivia doesn’t win, but she’s exuberant: “This is the most fun I’ve had all day!” Knowing that patients all over the Hospital are confined to their rooms, Seacrest Studios hosts live bingo twice a week. Child Life staff all over the Hospital hand out cards to patients, who play along with the TV in their room or come to the studio to play live. Winners call in to announce bingo and collect a prize from the studio’s swag bins filled with donated hats, posters, Frisbees, games and more. Some of them are even signed by celebrity guests who frequent Seacrest Studios. Tuesday at 2 p.m. is medical bingo, so instead of choosing, say, B 10 or G 53, host Kent Wyckoff draws cards with medical words and illustrations. “This is one of my favorite ones to say: G for gauze,” Wyckoff says, flashing a card with a picture of a roll of bandages. Bingo is just one of the beloved programs produced at Seacrest Studios. Others include Plate It, a show about healthy eating; sports talk show CSPN Sports 51; a daily music countdown; and the newest shows, Paper Trails, featuring creative arts professionals, and Highway 51 with local musicians. “Each live show is created to be interactive, entertaining, therapeutic and educational,” says Media Programs Manager Kris Schrader. “They’re filled with opportunities for children to play along or help actually produce the show with the studio’s equipment.”

Media programs specialist Kent Wyckoff leads bingo.

Olivia, 13, follows the bingo game on her TV.

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Twins Ayesha and Sufwan, 5

Bone Marrow Transplant Unit As twins Ayesha and Sufwan play with child life specialist Sarah Pajak, their distinct personalities come out. Ayesha is chatty and giggly, while Sufwan is more focused and reserved. But what the twins have in common is a rare disease that has severely weakened their immune systems. Both have had bone marrow transplants — twice. Confined to separate rooms in the Jeffrey Jay Weinberg Bone Marrow Transplant unit, they look forward to these daily playroom sessions with Pajak. She plans fun, structured activities, often with a purpose: to help gauge their emotions, prepare them for treatment or distract them from the stresses of a long hospitalization. Today, they’re making trees to celebrate the arrival of fall and make up for the fact that they can’t go outside. Pajak paints their hands and forearms brown, which they press to construction paper to form branches and trunks. The kids just turned 5 at the Hospital, and they had cakes with Spider-Man and Dora the Explorer. As Sufwan glues paper leaves to his tree, Pajak asks, “Was the cake bigger than my head?” He nods and they reminisce about the city they built for Spider-Man to swing around in. They do a lot of things in these sessions: reading, playing music, even dance parties. After Pajak helps Ayesha wash the paint off her hands, Ayesha says, “I wanna do it again!” Pajak picks up the brush and coats Ayesha’s palm with another rainbow of paint. “High five!” says Pajak.

Ayesha makes artwork with colorfully painted handprints. Winter 2014

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Drawing Strength

THIS PAGE: Vanessa, 12, and art therapist Lindsay Ratushny practice “syringe painting.” OPPOSITE: Vanessa with a turkey she made for Thanksgiving. 14

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Finding emotional healing through Child Life, Education and Creative Arts Therapy

By Julie Sloane

More than anything in the world, Vanessa Murillo loves to be with her family. At age 12, she is the youngest of five sisters, and when they are together, laughter pours out of the room. Vanessa’s expressive green-brown eyes dance as she says something mischievous — which happens a lot: Her mother, Gloria Orozco, just shakes her head and smiles. “As you can see, she’s a people person.” It is difficult for any child to endure isolation in a hospital room, but for an outgoing personality like Vanessa, it is particularly tough. Last year she spent seven months straight at CHOP, virtually unable to leave her room for fear of getting a life-threatening infection. What was it like? Vanessa doesn’t mince words: “Horrible.” When she was 8, Vanessa was diagnosed with Evans syndrome, a rare autoimmune disease in which her body mistakenly destroys her own healthy blood cells. Sometimes it’s the germ-fighting white blood cells, which leaves her open to infections. Sometimes it’s her red blood cells that carry oxygen. Sometimes it’s her platelets, which allow her blood to clot. And sometimes, as happened last year, she’s dangerously low in all three. She also has lupus, a second autoimmune disease. A recent gift to CHOP from philanthropist Barbara Brodsky is helping to study Evans syndrome, the cause of which is currently unknown. While Vanessa’s hematologists worked to manage her difficult disease, she spent weeks and months in isolation at CHOP. As the time dragged on, Vanessa increasingly turned to the one bright spot in her extended CHOP stay: the Child Life, Education and Creative Arts Therapy Department. Art therapist Lindsay Ratushny, M.A., A.T.R., and child life specialist Callie Helfrich worked hard to not only provide a sense of normalcy and childhood but also help Vanessa cope with the frustration of her confinement and illness. Helfrich came to Vanessa’s room every day at 2 p.m., bringing toys, art supplies and activities. Together they decorated every inch of Vanessa’s room, including her door. It became a monthly ritual. “If it was October, I would put pumpkins and leaves, and I would make the leaves stick out,” Vanessa explains. “If it was Christmas, I would make a Christmas tree and put beads to make it seem like it had lights.” Child life specialists also help explain procedures at an ageappropriate level and often distract patients during uncomfortable ones. Their work, along with that of the art and music therapists, is entirely funded by philanthropic donations to CHOP. When Vanessa couldn’t leave her room to attend fun patient events, Child Life brought the events to her. Though she couldn’t go

to the Joshua Kahan Prom, Helfrich and Orozco brought a selection of prom gowns to Vanessa’s doorway. While her mom chose traditional dresses, Vanessa instead selected a hot pink, one-shoulder sequined dress with feathers. (Never mind that it was about two feet too long.) Hair and nails done by volunteers, Vanessa sat in her dress all day and watched the prom on TV. With an art therapist, who is a master’s-level clinician, art projects have a deeper purpose: to help a child cope with being in the Hospital. For example, in twice-weekly art therapy, Vanessa chose to write and illustrate a book about her hospital experience. As with many art therapy projects, the process can be more important than the product. “Vanessa decided what she wanted her book to say and what was important to her,” says Ratushny, who is one of five art therapists at CHOP. “Talking about her experience and her family as she was

creating her book gave her an outlet to express things like feeling sad that she was away from them and sharing happy memories.” “Kids don’t have a lot of choices while they’re here at the hospital,” explains Ratushny. “And not having control over what is happening is a big source of stress. Opportunities for control are huge, and art therapy time is a time that they’re in charge.” Vanessa’s illness is currently more stable, so she’s able to live at home, though she wears a mask and gloves when she’s around people. (Sometimes her sisters wear masks, too, in solidarity.) She continues to develop her art. “She’s always had a thing for art,” says Vanessa’s 22-year-old sister, Jenn Gaitan, “but it’s really come out with all the art therapy and supplies available to her. She’s become really artistic, and it’s helped develop her personality.” Winter 2014

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AComplex Journey

Rescued from Haiti with numerous health problems, Bryon, 3, was fortunate to end up with a loving family living right in CHOP’s backyard. By Eugene Myers

Children's view

At only 3 years old, Bryon Siverain has already had more major surgeries than most people have in a lifetime. He has also come farther than most to get to CHOP — all the way from the Republic of Haiti. Bryon was abandoned in the small Caribbean country as a baby and rescued by a mission, which sent him to the U.S. on a special medical visa. His most urgent health concern seemed to be his clubfeet, but it was soon clear he had several other serious health issues requiring more medical care than the mission could afford. As a succession of families took care of him, one posted a picture of the 10-week-old boy on Facebook, where it caught the attention of Nancy Tate. Nancy and her husband, Kelley, already had three kids of their own — now all teenagers — but they had always planned to adopt another child one day. So when they learned about Bryon and his situation, they decided they wanted to make him part of their family. Winter 2014

“we just felt like we were called to do it. we both agreed, ‘we can help him. let’s take him,’” nancy says. the tates became Bryon’s temporary guardians in november 2011. as soon as they brought him home to Philadelphia, their first stop was the international adoption health Program at ChoP, which helps families adjust to new adoptions — particularly children like Bryon with special healthcare needs. Susan Friedman, M.d., the wawa endowed Chair in international adoption, and her team evaluated him and prepared the tates for the challenges they would face. and they were many. there were signs that the orphan had been abused, including a broken leg that had healed poorly and would need a series of orthopedic surgeries to fix. he was also suffering from cerebral palsy, visual impairment, malnutrition, and problems breathing and eating. it was a lot for any new caregiver to handle, even seasoned parents like nancy and Kelley. Friedman connected the family with the integrated Care Service (iCS), a team that coordinates care for inpatients who are medically complex and fall under multiple specialty areas at ChoP. that’s how the tates met annique hogan, M.d., medical director of iCS as well as Complex Care in the Patrick S. Pasquariello Jr., M.d., diagnostic and Complex Care Center. Patrick Pasquariello, M.d., and Mark Magnusson, M.d., Ph.d., founded the center more than 20 years ago to meet the needs of patients with difficult-to-diagnose illnesses. in 2009, funds raised through the annual daisy day luncheon allowed the center to hire a nurse coordinator, danielle Flynn, M.S., C.P.n., and formally expand its focus to care for medically complex patients. “the most common thing i hear is parents feeling overwhelmed,” hogan says. “they’re not really sure who’s captaining their ship.” Fortunately, hogan and Flynn are adept at navigating difficult medical waters. the first order of business was surgery to clear Bryon’s airway, and they inserted a feeding tube so that he could eat and get his weight up. only when he could breathe and eat could they plan to address his many other issues. that’s where Complex Care took over. Complex Care continues the mission of iCS but as an outpatient follow-up — coordinating patient care after the family has left the hospital. they discuss a long-term-care plan with the family that prioritizes the patient’s multiple issues, manages medication, and helps schedule treatments and follow-ups with different areas at ChoP. “dr. hogan has been a godsend to me, because we’ve got this little bundle and we’re like, ‘ah! what do we do with this kid?’” nancy says. “She and danielle do everything in their power to be there for you and not leave parents on the hook to figure out the medical system on their own.” ironically, the problem that brought Bryon to the U.S., his clubfeet, has been the last priority in his medical care. after a whopping nine surgeries (with one more yet to come) to fix his legs, feet and hips, he still has trouble with breathing and eating, but he’s also getting stronger, healthier and happier every day. “he coos to us and he smiles, and he laughs when you tickle him. he didn’t do any of that before,” nancy says. She and Kelley are currently working with the haitian government to formally adopt Bryon. “it’s been a lot bigger than we thought, but life-changing for all of us, to put somebody ahead of ourselves,” says nancy. “Bryon doesn’t say anything, but he totally knows we’re his family and we’ve got him.”

OPPOSITE: Bryon with his foster mom, Nancy Tate THIS PAGE: Bryon and Nancy with Annique Hogan, M.D.

Winter 2014

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Into the Genetic Future By Mark Turbiville

Pathologist-in-Chief Robert Doms, M.D., Ph.D. 18

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An exciting new initiative at CHOP is helping unlock the secrets of children’s DNA. “Do you want to know if it’s a boy or a girl?” For parents-to-be, this may be their very first parenting decision. Say no, and you delay one of life’s greatest surprises. Say yes, and the planning kicks into high gear: You can paint the baby’s room, buy the right clothes, start imagining your life in the years ahead in ballet recitals, model trains or T-ball games. So what do you say? There’s no wrong answer, of course. Either way, your child’s life won’t be affected. But in the years ahead, CHOP doctors envision the questions getting much harder. As our understanding of DNA expands exponentially, doctors are beginning to see things in our genes that may predict a child’s future — and not always a rosy one. Would you want to know if your newborn is at high risk for early-onset Alzheimer’s disease? Or cancer? If he or she was likely to have a greatly shortened lifespan, would you want to know? This isn’t idle musing. Gene sequencing and molecular testing is revealing more and more each year, and that offers terrific potential to diagnose diseases and find new ways to treat them. But sometimes unexpected, unrelated information turns up as well. Genomics has propelled us into a brave new world. “This is changing the face of medicine,” says Robert Doms, M.D., Ph.D., pathologist-in-chief, a CHOP President’s Scholar and the T. Hewson Bache Endowed Chair in Pediatrics. Doms, a giant in HIV/AIDS research, was recruited to CHOP to build the preeminent genomic diagnostic program in the country. “For the first time,” says Doms, “we can really peer into somebody’s cells, peer into their DNA and understand why they are suffering.” If doctors are like detectives hunting a diagnosis, then pathologists like Doms are the ones in the CSI lab running tests on the evidence. Today, these tests are incredibly powerful. Next-generation gene sequencing allows researchers to look at all 3 billion pieces of your DNA at once. What took the Human Genome Project a decade and a billion dollars to decode can now be done in a week for a few thousand dollars. It is happening around the clock at CHOP. “Decoding an entire genome offers a huge trove of information,” says Tom Curran, Ph.D., F.R.S.,

deputy scientific director of the CHOP Research Institute and the Mai and Harry F. West Endowed Chair in Pediatric Research. “It can point to genes that may be causing a disease that we may already have treatments for. It can point to genes that may be defective down the road. It’s really a blueprint of the entire body.” However, this blueprint also shows the skeletons in the genetic closet. “We’re finding genetic changes that may affect our patients’ future health,” says Nancy Spinner, Ph.D., director of the Division of Genomic Diagnostics and the Evelyn Willing Bromley Endowed Chair in Pathology and Clinical Laboratories. If these findings are what scientists call medically actionable, the next step is clear: They have an ethical obligation to tell patients and families what they’ve found. But what should doctors do if they discover that a child has a gene that predisposes him to an incurable disease? What if there were implications for the other children, or even the parents? Scientists acknowledge that just about every person could have incidental findings of some sort. Nevertheless, Spinner and her husband, Ian Krantz, M.D., a CHOP pediatrician and clinical geneticist, are trying to help doctors answer those tough questions. They are conducting a federally funded $9 million study to understand what genomic information patients and parents want to know and how doctors should handle any incidental genetic data. “There’s been a lot of research on the effect of people learning some of these things,” says Spinner, “and it’s not always negative, even if you can’t do something. People are glad to have the information and can make decisions accordingly.” For Doms, the ethics are still cloudy, but the potential of next-generation sequencing is crystal clear. “We’ll find cures,” he says. “The technology allows us not only to understand disease, but find ways to cure or prevent it altogether.” Data gleaned from next-generation sequencing will also help patients make better healthcare decisions and lifestyle changes. “The information we are gathering right now will be very useful to these children when they become adults,” adds Curran. “Now is the time to be paying attention to children and children’s health studies because you’re laying the groundwork for future healthy adults.” Winter 2014

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On Oct. 19, the Please Touch Museum in Philadelphia was a dramatic backdrop for the 2013 Carousel Ball, the Hospital’s signature biennial gala. More than 650 attendees dined, danced, mingled and even rode the museum’s historic carousel. Together, they raised more than $1.6 million for the new Buerger Center for advanced Pediatric Care — and had a terrific time in the process! The event was co-chaired by Samantha and Michael Jordan and Kathy and David Oberkircher, who led a committed team of volunteers. Brass Ring of Hope sponsors included Children’s Surgical associates Ltd., the Department of Pediatrics at The Children’s Hospital of Philadelphia, Friends of The Children’s Hospital of Philadelphia, Lehigh Valley Sporting Clays, Susquehanna international Group and Turner Construction Company.

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The Children’s Hospital of PhiladelphiaiBuddy Walki andiFamily Fun Day More than 3,300 people came out to Villanova university Stadium on Oct. 6 for the 12th annual Buddy Walk and Family Fun Day, sponsored by northwestern Mutual Eastern Pennsylvania. The event raised $247,000 for CHOP’s Trisomy 21 (Down syndrome) Program. Families enjoyed games, athletic activities, moon bounces, arts and crafts, music, sweepstakes, mascot appearances and more.

Blue Tag Galap The 2013 Blue Tag Gala was held on Sept. 14 at the Hyatt at the Bellevue in Philadelphia. The event raised more than $120,000 to benefit the Comprehensive Sickle Cell Center at CHOP. Co-chairs Darlene Logan and Steven Sanders and vice-chair Judith Royal led the ambassadors of Hope, who lent their passion and expertise to the event. Guests enjoyed dinner, dancing, a silent auction and a moving speech from patient Christian West.

Four Seasons Parkway Run & Walki The Four Seasons Parkway Run & Walk held on the Benjamin Franklin Parkway on Sept. 29 set record-breaking numbers with more than 10,500 participants and a record $1 million raised for pediatric cancer research and survivorship programs at CHOP. Special thanks to the 2013 Honorary Chairs, Kristen and Cliff Lee, as well as to the Winner’s Circle sponsors, the Grainger Foundation and Philadelphia insurance Companies.

98.1 WOGL Loves Our Kids Radiothon On Sept. 5 and 6, the 12th annual 98.1 WOGL Loves Our Kids Radiothon broadcast stories of hope and courage from the Colket atrium at Children’s Hospital. The 2013 Radiothon set a new record, raising $662,428 for patient care programs. Over its 12 years, Radiothon has raised more than $6.2 million for CHOP. Winter 2014

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4th Annual Casey Coyle Memorial Golf Outing for Cystic Fibrosis May 10, Harbor Pines Golf Club, Egg Harbor Township, N.J. • Golfers enjoyed lunch, a silent auction and numerous golf challenges, raising $19,000 for cystic fibrosis patient and family support. 2nd Annual Walk to Remember Taylor Buonadonna June 15, Washington Lake Park, Sewell, N.J. • This 5K walk/run honors the memory of Taylor Buonadonna. The walk raised $6,000 for the Oncology Social Work Emergency Fund.

Lend a Hand for Olivia June 30, Shipwreck Grill, Brielle, N.J. • This festival with a silent auction, food and drinks, and a live band raised $13,200 for the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit.

Chester Valley Golf Club Swim Team Swim for CHOP July 8, Chester Valley Golf Club, Malvern, Pa. • The Chester Valley Dolphins raised $15,000 by swimming laps to support Social Work, Child Life and the Cancer Center.

Midsummer Night’s Dream Dinner and Casino Night July 20, Norco, Calif. • Friends and relatives of the Lobato family held a dinner and casino night, raising $11,000 for osteogenesis imperfecta research.

Rowan’s Bake Sale for CHOP Aug. 4, Walmart, Harleysville, Pa. • Organized by the Horrocks family, this bake sale raised $1,226 for genetics research.

Our Family Foundation Golf Tournament July 13, 14 golf courses, Hershey, Pa., area • This one-day Our Family Foundation Golf Tournament raised $3.2 million for five Children’s Miracle Network hospitals supported by GIANT Food Stores, including CHOP.

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Kayla’s Hope for Kids 13th Annual Golf Tournament Aug. 5, Talamore Country Club, Ambler, Pa. • This 13th annual golf tournament with lunch, dinner, sweepstakes and golf challenges raised $32,951 for the Kayla’s Hope for Kids Fund, which supports brain tumor research.

KK’s 5K Aug. 5, Hare Pavilion at Riverfront Wilmington, Wilmington, De. • This 5K run/walk raised $8,000 for eosinophilic esophagitis research.

Miracle Treat Day Aug. 8, participating Dairy Queen locations nationwide • Participating Dairy Queens in our region donated a portion of the day’s Blizzard treats to the Children’s Miracle Network at CHOP.

The 8th Annual Kortney’s Challenge and a Day at the Races Aug. 11, Monmouth Park Racetrack, Oceanport, N.J. • This two-mile fun run/walk and day at the races, hosted by the Kortney Rose Foundation, raised more than $25,000 for brain tumor research.

Princess Tea Party Aug. 18, Ocean City Free Public Library, Ocean City, N.J. • The Ocean City Charity Chicks, a community service group for girls 10 and up, held a princess-theme tea party, raising $430 for Children’s Miracle Network at CHOP.

Gelatin Olympics Aug. 18, Cannstatter Volksfest-Verein, Philadelphia • American Heritage Federal Credit Union’s 20th annual Gelatin Olympics raised $20,000 for Music Therapy through its Kids-N-Hope Foundation.

Chelsea Delivers Hope Summer Family Music Festival Aug. 24, Bar Anticipation, Lake Como, N.J. • This music festival with live performances by Osler Circle and Calvin Okulicz raised $9,000 for congenital diaphragmatic hernia research and other causes at CHOP.

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The AND1 Summer Remix Tournament Aug. 29 – Sept. 1, Liacouras Center, Temple University, Philadelphia • This 12-team streetball tournament and slam dunk competition raised $25,000 for CHOP over Labor Day weekend. It featured former NBA and professional basketball players from around the country.

Digi Foundation Elvis Extravaganza Aug. 30, Cannstatter Volksfest-Verein, Philadelphia • Fifteen Elvis tribute artists from around the country put on a concert to raise $11,200 for the Cardiac Center. Attendees enjoyed the concert, which was emceed by Elvis tribute artist Ernie Hefferon.

Klinger’s 3rd Annual CHOP Golf Scramble Sept. 1, Arrowhead Golf Course, Douglassville, Pa. • Attendees enjoyed a round of golf followed by a prime rib dinner at Klinger’s on Carsonia and raised more than $6,500 for the Child Life Oncology Fund.

u pc o m I nG eve nT WI nT e r 2 0 14

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TWELVE STORIES OF GLASS AND STEEL. A MILLION STORIES OF HOPE. Breakthroughs, answers, insights, cures. incredible things will happen inside the new Buerger Center for advanced Pediatric Care — thanks to an extraordinary $50 million gift made by Connie and alan Buerger, Krista and reid Buerger, and grant Buerger. Fueled by the immense generosity of the Buerger family, along with the growing contributions of many individuals, we’re building the most advanced facility for children’s outpatient care in the world. and with it, we’re building hope. to learn about the many naming opportunities that can put your stamp on this new Philadelphia landmark, visit us online at chopbuildinghope.org.

GiftofChildhood.org

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

LEAVE A LEGACY

of Hope and Healing We invite you to link your life story with CHOP’s 158-year journey of making the world a healthier and safer place for children. By naming CHOP in your will, or as a beneficiary of a retirement plan, you won’t affect your current cash flow, and you can change your decision at any time. No gift is too small, and we welcome you to honor a loved one with your future gift. To create your own legacy of hope and healing, contact Tom Yates, director of planned giving: 267-426-6472 or yatestg@email.chop.edu. Gift of Childhood.org/plannedgiving

Roman | Age 2 | Orthopedics