Artist’s Conception

EXPANSION:

An Imperative This is a crucial time for children’s healthcare in West Virginia. Because more and more families choose us to care for their children, WVU Children’s Hospital is at or near capacity nearly every day. Sometimes we’re too full. Yet the need for our services —often lifesaving services—continues to grow. We never want to turn away a sick child or an expectant mother who seeks our help. That’s why we simply must expand. With enough support from generous donors, we will be able to build an addition to the existing hospital to provide crucial services. Our goal in the Campaign for Expansion is to raise at least $25 million to meet the medical needs of our children—our future. You can help. See the donor information on the back page of the newsletter.

Expansion Campaign Committee C. Brent Wilmoth, Chair Kenneth Cole Vickie Cole James L. Estep

Kelly S. Gustafson William A. Neal, MD Stacy L. Shearer Aaron R. Yost

Neonatal Intensive Care Unit Many babies born in our hospital are premature or come into the world with serious health problems. These infants spend days, weeks, and sometimes months in our NICU until they are ready to go home. The NICU needs to expand to accommodate additional isolettes and to provide space for modern medical technology.

Family Resource Center This will be a place for parents to learn new skills to care for their child at home - everything from wound care to insulin injections to CPR would be taught here. In addition, this center would provide patients and families with a place in which they can explore research relating to their illness or health problem.

Pediatric Clinics and Research To provide the full scope of care our patients need, we hope to recruit 10 additional pediatric specialists. More doctors means more space will be needed for exams, treatment, therapy, and research.

Pediatric Infusion Center This unit provides outpatient intravenous infusion for children with cancer, immune deficiency diseases, or kidney problems. To meet current and anticipated demand for these services, we need to double the size of this unit.

Maternal Infant Care Center We care for children even before they’re born. Seven out of every 10 births in our hospital are considered “high risk.” These expectant mothers come to us because we have the commitment and expertise to help them. We need more space for these mothers and their families. We are in particular need of additional space for round-the-clock monitoring of mothers with high-risk pregnancies, as well as an additional operating room for unexpected C-sections.

Why We Give “We’re so fortunate to have WVU Children’s Hospital. When I see what happened with my own family and I see the kids that come in there and need help—if we can help children across this state, we can’t do much better for people. I’m a firm believer that the only thing you take with you when you leave here, no matter how much you make, is what you give away.” Mike Ross Mike Ross, Inc.

Aaron’s Luck

Acorns have long been symbols of good fortune. Lucky for Aaron Connors that, in his time of desperate need, WVU Children’s Hospital was there for him. Born at 34 weeks, Aaron and his twin, Ryan, both spent days in the Neonatal Intensive Care Unit with other premies, but only Aaron arrived with a serious congenital heart problem, Tetralogy of Fallot. He had open heart surgery just days after his premature birth, when his heart, as WVU pediatric heart surgeon Robert Gustafson, MD, told his parents, was “the size of an acorn.” Dr. Gustafson had wanted to postpone surgery until Aaron was older and bigger. But with Aaron’s strength failing and his weight down from four pounds to just three, surgery could no longer be delayed. Sarah and Jeremy Connors feared the worst for their son. “We couldn’t get our minds around how they were going to operate on such a tiny little person,” Sarah says. But as they watched Aaron’s medical team prepare him for surgery, Sarah said, “They haven’t given up, so we shouldn’t give up either.”

For more information please visit:

www.wvukids.com

West Virginia has only one pediatric heart surgeon, and it has been the state’s good fortune that he is nationally renowned for his exceptional skill and commitment. Dr. Gustafson has operated on thousands of young patients, and in many of their households his nickname, Doctor Gus, is near legendary. Aaron’s surgery, the most delicate of procedures, was successful. “Our family is complete because of Doctor Gus,” Sarah says. While Aaron, now 3, continues to be followed by WVU Children’s outstanding team of pediatric cardiologists, today his heart is considered fully repaired. When he grows up, he may look at an acorn a little differently than most people do, having heard from his parents the story of his surgery – and of the good luck that found him and his tiny heart at WVU Children’s. Visit wvukids.com for more about Aaron’s story.

SAVING YoungHearts One of West Virginia’s under-appreciated medical treasures is the Pediatric Heart program at WVU Children’s.

Fetal echocardiography is a particular strength of the program, enabling physicians to assess a baby’s heart health before birth. Detection of a serious problem may indicate the mother should The program includes the state’s only pediatric deliver at a hospital equipped to deal with high-risk heart surgeon, nationally celebrated for his skill pregnancies. At the other end of the age spectrum is and dedication; a large team of exceptional treatment for adults with congenital heart problems, pediatric cardiologists with experience at the which remains largely the province of pediatric Larry A Rhodes, MD nation’s best-known children’s hospitals ; talented Pediactric Cardiology specialists. One of Dr. Rhodes’s patients is 68 years nurses and support staff; and facilities and old. Thanks to the success of pediatric heart care, technology that are second to none. an increasing number of patients are reaching adulthood with Larry Rhodes, MD, is chief of pediatric cardiology. He trained at congenital problems that can be managed if not cured. WVU and Harvard’s Boston Children’s Hospital, and practiced at WVU until 1995, when he left to practice at Children’s Hospital of Philadelphia. But Dr. Rhodes is a West Virginian at heart, and in 2005 the state called him home. Beginning in the 1970s, pediatric cardiologist Bill Neal, MD, set out to take heart services to children in communities around “There are larger Children’s Hospitals and better known ones. I West Virginia, rather than require them to travel to Morgantown. worked at two of the best. But our standard of care is fully equal The program continues to this day, with heart doctors from to theirs. Speaking personally—if I didn’t know this to be true, I WVU Children’s periodically visiting Martinsburg, Parkersburg, wouldn’t be here.” Wheeling, Lewisburg, Beckley, Princeton, and Charleston. With seven pediatric cardiologists, a pediatric heart surgeon, “We’re truly a hospital for all West Virginia’s children, and seeing an anesthesiologist dedicated to pediatric heart surgery, them in their home communities is a convenience for them and perfusionists, nurses, and other healthcare professionals a labor of love for us,” Rhodes says. dedicated full-time to pediatric hearts, WVU Children’s heart program is large enough to offer nearly all the services found The same warm spirit of service and caring pervades WVU anywhere (an exception is heart transplants, for which there is Children’s itself. limited need in West Virginia). “There’s a family atmosphere that includes nurses, doctors, and Within the state, some services are uniquely found at WVU other staff. We get to know many of these children and their Children’s, such as interventional procedures for children with parents, brothers, and sisters very well, and after they leave the arrhythmias. hospital we often keep in touch,” Rhodes says. “Ask anyone who works here—it’s incredibly rewarding.”

More Than a Hospital

Tracy Coup, CPNP, PNP-BC Nurse Specialist, Pediatric Cardiology

Arpy Balian, MD Pediatric Cardiology

Bryan Funari, MD Pediatric Cardiology

Robert Gustafson, MD Pediatric Cardiothoracic Surgery

William Neal, MD Pediatric Cardiology

Stanley Einzig, MD, PhD Pediatric Cardiology

John Philips, MD Pediatric Cardiology

Malek El Yaman, MD Pediatric Cardiology

David Rosen, MD Pediatric Anesthesia (Cardiac)

When

Pregnancy Is a Risk

Dr. Hochberg with new parents in the MICC.

Although most women have relatively smooth pregnancies, some may experience what doctors call high-risk pregnancies. A pregnancy is considered high risk when certain complications—such as diabetes, high blood pressure, placental abnormalities, severe obesity, and other issues—pose a health danger to baby, mom, or both. It is important for high-risk mothers to be monitored and given the right care throughout their entire pregnancy.

MICC, these patients are advised on the type of care they should receive and then return home to receive that care from their local providers. The MICC also sees local high-risk patients who prefer to be seen in the high-risk clinic throughout their pregnancies. Also, patients who encounter a high-risk situation during their pregnancy and need care that’s not available locally come to the MICC – some for extended stays in the hospital.

The Maternal Infant Care Center (MICC) at WVU Children’s has the medical expertise and resources to provide the best care possible for pregnant women at high risk.

One relatively new high-risk factor is drug addiction in expectant mothers. Unfortunately, drug addiction is an increasingly common complication among pregnant women in West Virginia. Although these women are often denied care at other institutions, the MICC treats women with these issues.

“Many of our patients start off a pregnancy thinking things are going smoothly, and then everything turns poorly quickly,” said Charles Hochberg, MD, associate professor of obstetrics and gynecology. “That’s when we step in.” The MICC accepts high-risk patients from other providers across West Virginia and the surrounding area. At the

With both normal and high-risk pregnancies, the MICC’s goals are the same: healthy moms and healthy babies who are given a good start on life.

Why We Give “I support WVU Children’s personally because it’s the right thing to do. The care they give to the children of our communities is world class. The financial status of the family doesn’t matter—the child gets that care. If you don’t believe it, go visit. It’ll bring tears to your eyes and warmth to your heart.” Harley Sanders

District Manager, Kroger

Injured Dancer Is Back on Her Feet In a matter of seconds on April 13, 2012, the life of Meg Throckmorton of Waynesburg, Pa., changed completely. In one moment, she was a healthy 16-yearold practicing for an upcoming dance competition. In the next, she couldn’t feel her arms or legs and was struggling to breathe. The trick she was rehearsing in her mother’s dance studio—a standing back tuck—was one she had done a thousand times. “There was one other girl in the room with her at the time, and she said it was almost like Meg was suspended in the air and then she came down on her head,” Meg’s mother, Dolly, said. Meg was airlifted to Ruby Memorial Hospital’s Jon Michael Moore Trauma Center, where it was determined that she had suffered a high cervical spine injury. She was admitted to the pediatric intensive care unit (PICU) at WVU Children’s. The next morning, she underwent neck surgery, performed by orthopaedic surgeon John France, MD. In addition to being quadriplegic as a result of the injury, Meg was unable to breathe on her own, which meant she needed a ventilator to breathe for her. Jennifer Knight, MD, was the trauma surgeon on call the evening Meg arrived at Ruby and was brought in to consult on her case. Dr. Knight is also the first surgeon in the state to implant a diaphragmatic pacemaker in an adult patient. The device, NeuRx DPS, is currently being used in fewer than 35 cities nationwide, according to its manufacturer, Synapse Biomedical. WVU is the only center using the device in West Virginia.

An upper spinal cord injury breaks the connection between the brain and the diaphragm – the brain can no longer tell the diaphragm to contract, which is essential for normal breathing. But for some people who suffer this type of spinal cord injury, a pacemaker for the diaphragm can be put into place to help them breathe. Just as the more familiar pacemaker for the heart helps to control the heartbeat, a diaphragmatic pacemaker stimulates the diaphragm to contract.

“They say you’ll go to the ends of the earth for your child, and when something like this happens, you don’t really have a choice,” Dolly said. “We are very thankful for the care Meg received at WVU Children’s.”

The pacemaker is approved by the U.S. Food and Drug Administration for use in patients 18 years old and older. While Meg was just 16, Dr. Knight and her team were convinced that she would greatly benefit from the pacemaker. The procedure won swift institutional after it was determined that the two-year age difference did not put Meg at any significant risk. “Meg fortunately was taken to one of the few trauma centers that use the device,” Dr. Knight said. “We started planning for the surgery immediately after she arrived. Everyone involved in Meg’s care worked very hard to make this happen as quickly as possible. It worked perfectly.” When Meg left WVU Children’s, she spent several weeks in Atlanta, Ga., at the Shepherd Center, a private hospital specializing in treatment and rehabilitation for people with spinal cord injury and brain injury. While in Atlanta, Meg was able to come off of the pacemaker and breathe completely on her own. She also began learning to walk again. She returned home in time to start her junior year of high school.

Our New Physicians Pediatric Anesthesiology Charles Honsinger, MD Pavithra Ranganathan, MD Pediatric Cardiology Bryan Funari, MD Pediatric Endocrinology Brian Ely, MD Pediatric Hematology/Oncology Ofelia Crombet, MD Hospitalist Yemisi Jones, MD Chickajajur Vijay, MD Pediatric Nephrology Oulimata Grossman, MD Pediatric Neurology Jodi Lindsey, MD

For more information please visit:

www.wvukids.com

Pediatrics Michelle Ruda, MD Pediatric Urology Osama Al-Omar, MD

Protective

New Environment Rooms Open WVU Children’s Hospital opened three new protective environment rooms specially designed for pediatric cancer patients in 2012. Dr. Stephan Paul with Brock Yeater, first patient in one of the new rooms.

In protective environment rooms, air pressure inside is greater than it is outside the room. Air flows out instead of in so that germs in the air will be kept away from the patient. Such an environment is especially important for patients being treated for cancer because their immune systems are often compromised. The rooms are private, single-bed rooms with a sleeper sofa for family members. There is a curtain in each room that can be used to separate the patient’s space and the family space so that each side can have privacy. Because the patients who will use the rooms are generally those who spend a significant

amount of time in the hospital, the rooms have their own bathrooms with showers and provide families with ample storage space for clothes and other belongings. Each room is also equipped with a television and video game station, which was made possible through a donation from the Fringe Little League Association. Charles and Kelly Helmick of Weston, whose 3-year-old daughter Claire passed away in August 2010 after a six-month battle with leukemia, provided input on the design of the rooms so they would best meet the needs of both the patients and their families. One two-bed patient room was eliminated to construct the three single-bed rooms. With this addition, the general pediatrics unit at WVU Children’s Hospital now has 29 beds.

Why We Give “Just about everyone in our group has had someone, or knows someone, who has been in WVU Children’s, so it hits close to heart and home for us. WVU’s Children’s is an amazing place, with wonderful doctors and nurses and programs that benefit the entire family. When you have a sick child, you want to take them to the best place you can, where you know they’ll be well taken care of—it means everything.”

Sharon Sisler Log-a-Load for Kids Mountain Loggers Cooperative Association

Reaching Out

As the state’s only neurosurgeon specializing exclusively in pediatric cases, John Collins, MD, makes it his mission to be sure all the children of West Virginia have access to the highquality care he provides. To that end, Dr. Collins conducts clinics with patients in Wheeling, Lewisburg, and Elkins, in addition to the patients he sees in Morgantown.

Once a month, Collins travels to Wheeling, where he holds clinic hours and operates. He also holds monthly Medical Doctor Television (MDTV) appointments with patients in Lewisburg and Elkins. A nurse practitioner is on hand at both locations to gather patient histories and conduct

neurological examinations. Those patients then come to Morgantown for surgery.

“My philosophy of care is Star Wars technology delivered in a Mr. Rogers-inyour-neighborhood sort of way,” Collins said. “I’m trying to extend my availability to everyone in the state.” Collins believes the greatest strength of WVU Children’s Hospital’s neurosurgery program is the people who help him treat the kids and families that come to him for care. “It’s very rewarding to work with such excellent people,” he said. “WVU Children’s Hospital is the people.”

Beckley Sam’s Club Is Country’s Top Children’s Miracle Network Fundraiser When it came time to kick off the 2012 Children’s Miracle Network fundraising campaign, the employees of the Sam’s Club in Beckley, WV, decided to “go big or go home.” Little did they know that they would go bigger than any other club in the country when all was said and done. Between January and October, the club’s employees raised $60,095 for WVU Children’s, which is the only Children’s Miracle Network hospital in the state. To raise those funds, the Sam’s employees and the community came together for all sorts of events. They kicked off the campaign with a 1980s themed celebration. They played “cow chip bingo.” They held a shopping cart race with their store manager to see how many carts he could push in 30 minutes.

They threw “Cheeseburger in Paradise” events every Friday and Saturday during the six-week campaign. They also teamed up with Beckley Motor Speedway for “Racing for Miracles,” from which a portion of every ticket sold was donated to Children’s Miracle Network. The drivers took up a boot collection during their breaks. Club members donated at the registers, and several charity nights were held at restaurants in the Beckley area. There were also hot dog, barbecue, and bake sales, as well as an Earth Day 10K race. For being named the top fundraiser in the country, the Walmart Foundation donated an additional $25,000 to WVU Children’s Hospital, bringing the total raised to more than $85,000.

Consider Making a Planned Gift Remembering WVU Children’s in your will is a wonderful way to ensure that the goodness in your heart continues to help children after you’re gone. A commitment to WVU Children’s is a gift of life, health, and faith in the future. Learn more at wvukids.com

Make a Gift That Makes a For many of us, nothing is more precious than the lives and health of children. Your gift to WVU Children’s Hospital is a way to help children when they’re most vulnerable. You can learn more at wvukids.com.

Difference

Complete this gift form and send to: WVU Children’s Hospital, PO Box 8200, ROC117, Morgantown, WV 26506 Step #1 Fill in Your Personal Information (Please print clearly) Name ___________________________________________________________________ Address _________________________________________________________________ City________________________State ______ Zip __________ Phone:_______________

Step #2 Make Your Gift

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Monthly Pledge

I want like to make a monthly pledge over the next 3 years: [] $10 a month [] $25 a month [] $50 a month [] $_____ a month

One-Time Pledge [] Enclosed is my one-time $______gift payable to WVU Children’s Hospital

Step #3 Method of Payment [] Check or Money Order Enclosed [] Credit Card – please visit wvukids.com OR call 304-598-4346 to arrange [] Stock Contribution – please call 304-598-4346 to facilitate

Step #4 Please Use My Donation to Support: [] Building Expansion

[] Greatest Needs

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Thank you for making miracles happen. WVU Children’s Hospital Leadership Larry Rhodes, MD Interim Physician-in-Chief Interim Chair, Department of Pediatrics Michael Vernon, PhD Chair, Department of Obstetrics and Gynecology Cheryl Jones, RN, MSN, Director Executive Editors Andrea Parsons Dee O’Palko

Writers Angela Jones-Knopf Rebecca Diehm Jay Coughlin Questions or comments: [email protected]

Inpatient and most outpatient services of WVU Children’s Hospital are operated by West Virginia University Hospitals, a member of the West Virginia United Health System.

WVU Children’s Hospital, PO Box 8200, ROC117, Morgantown, WV 26506