PediatricsA MedStar Georgetown University Hospital Publication Fall 2014

Atypical Illness in ‘Normal’ Teen Requires Extraordinary Treatment By Henry Mortimer

After spending a week at the beach, Shawn Zupancic and his family were riding in the car heading back to their home in Calvert County, Md. Really an ordinary day.

Then, all of a sudden, nothing seemed ordinary. “Shawn began to experience severe chest pains and was having difficulty breathing,” recalls Donna, his mother. “I gave him some Advil for the pain and considered taking him to the nearest ED. I didn’t know how bad it was or what else to do.”

2 The Importance of the Parent in the Treatment Plan

3 From Mystery Illness to Medical Answers 4 Childhood Asthma and

the ED: Knowing What to Do Before You Go

6 Hope Abounds: The 2014 Pediatric Gala

IN THIS ISSUE

MedStar Georgetown

continued on page ten

Shawn rides his Monovelo, a bike that comes from China. The process of ordering it and getting it through U.S. customs kept Shawn busy and in good spirits during his hospital stay. Photo by Donna Zupancic

Serving Patients the Best Hand Possible By Leslie A. Whitlinger

Who knew that remembering what it was like to be an 11-year-old boy could be so important to patient care and recovery? Yet that insight into adolescent behavior served Michael Kessler, MD, well on the night of December 28, 2011, when the MedStar Georgetown Chief of Hand Surgery first encountered Danny Koenig.

That night, the 11-year-old accidentally thrust his right hand through his family’s French doors while diving for a toy during a Hanukkah celebration. The calamity

left Danny with the skin, muscle and other tissues of his middle finger ripped open—in some places all the way down to the bone. Parents Amy Schwartz and Eric Koenig immediately called nearby MedStar Georgetown, where frontline staff said doctors would be ready and waiting.

“With three active children, we’re no strangers to the hospital’s Emergency Department,” Amy says. “In fact, we’ve been there several times before and always with excellent results.”

Danny Koenig attended summer camp and participated fully in the activities thanks to successful orthopaedic surgery by MedStar surgeon Michael Kessler, MD.Photos courtesy of Danny’s brother Alexander

continued on page nine

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Message From the ChairmanThe Importance of the Parent in the Treatment PlanDear Friends,

I hope this letter finds you in good health and ready for your children to begin another school year. Though summer is a time for play and relaxation, we now look toward a new season of learning.

It is an incredible thing to watch as our children develop and grow from year to year and even more incredible, for many of our families, to watch their children overcome burdening obstacles, thanks to the hard work and dedication of the many doctors, nurses and staff in the Pediatrics Department here at MedStar Georgetown University Hospital.

In this issue, our patients’ stories are those of overcoming sudden setbacks and immediate health concerns. It is hard to predict or plan for medical emergencies, but the Pediatrics Department at Medstar Georgetown is equipped for the emergency care of every child and family.

Equally important to being prepared for these emergencies is the range of skills and expertise we are able to bring to each case, including the many complex and rare diagnoses we treat. In every case, our multidisciplinary team develops an individualized plan for health management and recovery. Each patient is provided the utmost care and concern. We work to involve you and your family in every step of your healing process.

We want the conversation between our medical professionals and families to be interactive so that they can make the best decision for their child’s treatment, as Danny Koenig and his

family were able to do with Dr. Kessler following surgery on Danny’s hand. The Zupancic family had a similar experience in the care they received from Dr. Lin (see stories on page one).

Beyond conventional treatments, our specialists treat a variety of families experiencing extremely difficult conditions, such as the Penkert family. Their long-unknown medical diagnosis is now being monitored by a multidisciplinary team of doctors including

Aziza Shad, MD, Chief of Pediatric Hematology/Oncology (see story on page three).

For those who need our care, my sincerest hope is that our medical professionals and their extensive expertise bring you confidence at an unsettling time. Please know that our staff at MedStar Georgetown is dedicated to cura personalis—care of the whole person. We know that when we treat children, the entire family must be involved in the treatment plan.

Warmest regards,

David B. Nelson, MD, MSc Chairman, Department of Pediatrics, MedStar Georgetown University Hospital

Photo by Andrea Grego

Visit MedStarGeorgetown.org/FindaDoc to find a MedStar Georgetown pediatrician or call 202-295-0547 to make an appointment.

Our New Tenleytown Location

Our pediatric clinic phone numbers have changed, and you can continue to schedule appointments by calling 202-295-0547. Find our easily accessible services, parking and convenient public transportation at 4200 Wisconsin Ave., NW, Washington, DC 20016, near the Tenleytown Metro (Red Line).

• Adolescent Medicine• Cardiology• Dermatology• Eating Assessment and Treatment

Team• Endocrinology, Diabetes and

Metabolism• Gastroenterology and Nutrition• Genetics

• Infectious Disease• Nephrology• Neurology• Otolaryngology• Oral Health Services• Pediatric International Travel• Primary Care• Pulmonary Medicine• Sleep Disorders Clinic

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From Mystery Illness to Medical Answers By Jennifer Davis

For any parent, having a sick child is difficult. Jessica and Michael Penkert had three of them. Worst of all was not knowing the cause of their serious and persistent health problems.

The Maryland couple was given diagnoses of everything from cystic fibrosis to failure to thrive, but that only partially explained the extreme medical problems their three daughters faced. That’s because Hannah, Rachel and Sarah experienced symptoms ranging from severe abdominal pain, infections, nosebleeds and trouble gaining weight to chest pain and more than a dozen food allergies per child.

When their gastroenterologist, the late Dr. John S. Latimer, took a job working at MedStar Georgetown University Hospital, the family followed him there. And after numerous tests through the years with a variety of specialists, they finally worked their way to definitive diagnoses, which were both surprising and daunting.

All three children and both parents have Ehlers–Danlos Syndrome, an inherited connective tissue disorder caused by a defect in the structure, production or processing of collagen, which results in hyperelastic skin that bruises easily and damages blood vessels. Hannah and Rachel also have Von Willebrand disease, a bleeding disorder that affects the body’s ability to clot. And by 2012 the entire family was also diagnosed with thrombophilia—an increased ability to clot, making management even more challenging.

“Knowing the diagnosis was such a relief. Prior to this, there was no explanation. It was terrifying,” their mother Jessica sighs.

These conditions are all extremely rare, have no cure and are a lot for any family to manage. But thankfully, the family didn’t have to manage alone. Aziza Shad, MD, Chief of Pediatric Hematology/Oncology at MedStar Georgetown University Hospital, helped them every step of the way.

“When you need the level of medical care that we do and your child’s life is hanging in the balance, you feel helpless,” says Jessica. “It is so reassuring to have a doctor you can access easily and trust with your children’s health. Dr. Shad and her staff are the best at that. She has a great wealth of resources, and she is always there when we need her.”

Dr. Shad is also the Director of MedStar Georgetown’s Leukemia Lymphoma Program and Director of the Cancer Survivorship Program. She concentrates her treatment and research on childhood cancer survivors and their quality of life.

The Penkert family is happy and healthy thanks to Dr. Aziza Shad and her team of MedStar Georgetown doctors who continue to manage the family’s complex diagnoses. From back left to front right, Jessica, Rachel, Mike, Hannah and Sarah. Photo by Rick Reinhard

continued on page eleven

Dr. Shad helped us confirm the

diagnosis, which was such a relief.

Prior to this there was no explanation

and it was terrifying.

Jessica Penkert

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Childhood Asthma and the ED: Knowing What to Do Before You GoBy Tamara Katy, MD, Emergency Department Pediatrician

According to the American Lung Association, each year asthma accounts for more hospitalizations in children—and, by extension, more missed school days—than any other chronic illness. On average, children with uncontrolled asthma visit the Emergency Department (ED) three times a year.

Asthma is a chronic disease that causes the airways in the lungs to become inflamed or swollen, making it hard to breathe. However, asthma is often hard to diagnose and, as a result, can be difficult to properly manage in young children who may have the disease. Parents struggle too when they see their children suffer an asthma attacks.

First important question: Mild or severe?The first step in managing your child’s asthma is to know the difference between mild and severe attacks. Initial signs of an attack include rapid breathing or feeling out of breath, an inability to speak in full sentences (for children old enough), a persistent cough not due

to a cold or other illness, wheezing, chest pain and exhaustion.

Observe the child’s breathing—is it rapid? Look at the chest wall under his or her clothes—do the muscles look like they are sucking in, in and below the rib cage? Is the child working too hard to breathe? Are the lips or fingernails turning blue? Is the child becoming fatigued? If you notice any of these signs, call 911 immediately.

If symptoms appear mild, however, call your child’s doctor first. He or she will advise you if and when it’s time to go to the ED. But don’t wait too long to decide, especially if you are concerned that your child’s condition is worsening.

Next step: Remain calmIf you need to go to the ED, it is important for you to remain calm and in control. Children are very sensitive to a parent’s mood or behavior, especially in stressful situations.

Be as calm as possible, to provide comfort and avoid exacerbating the situation. Difficulty breathing is already causing enough anxiety in your child.

Emergency Department physician Tamara Katy, MD, helps parents understand how to care for their children with asthma.Photo by Herman Farrer

Inhalers used during an asthma attack can help ease breathing and avoid a trip to the ED.

Eliminating triggers wherever possible helps prevent asthma attacks.

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Talk to your child. Explain what is going on—that you are going to the ED to get help from a doctor and to feel better. Bring a book, an iPad or tablet, a favorite toy or stuffed animal, or something else to entertain your child while waiting, both in the reception area and during testing.

TreatmentTreatment in the ED may include oxygen delivery, breathing treatments to open the lower airways, and possible corticosteroids—medicine to reduce inflammation in the lungs. If your child does not show signs of improvement, he or she will be admitted to the hospital.

Manage future attacksFollowing the visit to the hospital, parents can do a number of things to manage future asthma attacks and avoid a trip to the ED. The most important step is understanding the medicines you’ll be taking home.

• A rescue medication, used only for quick or short-term relief to open airways and restore normal breathing. This form of short-term relief opens bronchial paths in the lungs using a nebulizer—a toaster-sized machine that pumps medicine into the air your child breathes through a mask or an inhaler with an adapter.

• Inhalers used to ease breathing in the case of an attack.

• A controller medication, such as inhaled corticosteroids, which can be used to prevent attacks and can be taken for a prolonged period. It is important to understand the difference between your child’s rescue medication and his or her controller medication.

• Some children will receive oral corticosteroids (pills or liquids) to take for a few days following an attack as well.

Your child’s doctor will recommend the proper dosage for each medication. In all cases, it is important to read the take-home materials to avoid getting the medications mixed up or taking them out of order.

It is also important to learn about triggers and what to avoid. The worst trigger for children with asthma is tobacco smoke. Smoking outside the home or away from your child is not a solution because smoke particles linger on clothes, skin and hair. Other

triggers include pollen, dust mites, mold, odors and pets. By eliminating triggers you will lessen the likelihood of your child suffering an attack. Follow-up careMost healthcare providers recommend an asthma management plan. We offer a simple and basic plan in the ED to avoid information overload and increased anxiety. Beyond the care and information you will receive in the ED, it is always best to follow up with your child’s physician for further treatment and to determine if your child needs to see a specialist.

With proper understanding of the disease and how to manage it, children will be able to breathe more easily and can avoid unnecessary trips to the ED.

Visit MedStarGeorgetown.org/FindaDoc to find a pediatric allergist or call 202-295-0547 to make an appointment.

Environmental triggers can often bring on asthma attacks.

It is important to learn about

triggers and what to avoid. One of

the worst triggers for children with

asthma is cigarette smoke.

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Hope Abounds: The 2014 Pediatric Gala By Laura Matheos

Hope was a recurring theme at this year’s Pediatrics Gala held in March. As Peter Brown and Victoria Sardi-Brown, MD, received the 2014 Flame of Hope Award on behalf of The Mattie Miracle Cancer Foundation, they shared the empowering nature of the hope that drives them. “We are awed by the exceptional generosity this foundation has shown the children we care for here,” said Dr. David Nelson, chair of Pediatrics at MedStar Georgetown. The Foundation’s gifts support the hospital’s pediatric oncology staff and programs.

Another event highlight inspired even more hope among the Gala attendees during the auction. A tremendous outpouring of support ensured that every teen in the “Send a Kid To Camp” campaign would be able to attend camp at Hollywood Heart this summer. “This is a place where children with HIV are able to strengthen their own hope for a complete life,” said Dr. Nelson.

Hope in Hollywood“Having HIV can be very isolating,” explains HIV Family Services Coordinator Janet Osherow, MSW, LICSW. Working closely with families receiving care at MedStar Georgetown’s Division of Pediatric Infectious Disease, Osherow says,

“Our kids don’t feel like they can share their HIV status with friends. They desperately need a place where a disease doesn’t define them, if only for a little while.”

That’s where Hollywood Heart, a non-profit camp in Malibu, Ca., comes in. Hollywood Heart brings teens impacted by HIV/AIDS together for an intensive week-long experience. Here, they explore their creativity and resilience without the stigma they feel the other 51 weeks of the year. Seven years ago, Osherow began accompanying MedStar Georgetown patients to the camp. Thanks to the generosity of donors, 12-15 teens now travel by plane—often for the first time—to Malibu to explore talents, feelings and surroundings that are worlds away from their daily lives.

“The camp is amazing in so many ways,” says Osherow. “Everyone at the camp has been impacted by HIV/AIDS. So everyone ‘gets it.’ You’re surrounded by people who walk in your shoes. This isn’t a camp where the focus is on your disease. The focus is on your creative potential, encouraging you to explore that other 99 percent of yourself that shouldn’t be defined by a virus. Some of our kids find hope and passion they’ve never experienced before.” Camp

counselors help the children with both feelings and career guidance, offering a way forward after camp ends.

MedStar Georgetown started its partnership with Hollywood Heart through grants from the Casey Teeley Foundation and the Children’s Charitable Trust Foundation. When those grants ended, Dr. David Nelson, Chief of Pediatrics and Dr. Charlotte Barbey-Morel, Chief of Pediatric Infectious Disease, worked to find continued funding.

“The camp has an enormous impact on our kids,” explains Dr. Nelson. “So we now ask donors at the annual Gala to sponsor a teen’s camp experience. Through their incredible generosity, we’ve been able to sustain the program. Our donors are changing lives in a very direct way with their gifts.”

Left to right, Mr. Peter Brown and Dr. Victoria Sardi-Brown were presented with the Flame of Hope Award by Ms. Linda Kim and Dr. Aziza Shad for all the work The Mattie Miracle Cancer Foundation has done in addressing the psychosocial needs of children and families living with childhood cancer. Photo by Leslie E. Kossoff

To support MedStar Georgetown’s Hollywood Heart program, contact Katherine Potosky, Senior Philanthropy Officer for MedStar Georgetown Pediatrics by calling, 202-243-3418 or by email at Katherine.R.Potosky@gunet.georgetown.edu.

To learn more about supporting the program, contact Janet Osherow at jxo10@gunet.georgetown.edu or call 202-243-3480.

Dr. David B. Nelson, left, MedStar Georgetown’s Pediatrics Department Chair, joins donor Rafic A. Bizri, President and CEO of The Hariri Foundation-USA, at the 2014 Pediatrics Gala. The Hariri Foundation donated $150,000 to support pediatric care at MedStar Georgetown. Photo by Leslie E. Kossoff

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Following Ryan Darby’s leukemia diagnosis in 2010, Mollie Darby, Ryan’s mom, turned to her women’s running group for help in forming an event that would epitomize her son’s strength and resilience, while also raising awareness and funds for other families with children diagnosed with cancer. Together, Mollie, Ryan, and other friends and family members held the first annual JUST TRYAN IT (JTI) kids’ triathlon in 2010. Four years later, their small idea has brought together many children and families, all supporting one another through this fun event. On Sunday, June 15, 2014, over 500 children ages 6 through 14 came together to swim, bike and run at the fifth annual JTI kids’ triathlon. This event is organized by JTI’s dedicated staff and volunteers who have granted over $500,000 to the JUST TRYAN IT Fund for Family Assistance at the pediatric hematology/family

assistance oncology clinic at MedStar Georgetown University Hospital. Over 90 percent of families who come to the clinic receive financial assistance made possible by this fund at some point during the course of their child’s treatment. The JTI team seeks to instill the importance of philanthropy and service and to inspire tomorrow’s leaders to make a difference in their communities. The kids’ triathlon accomplishes this by empowering race participants to raise funds and awareness for an important cause. Those who choose to raise money do so through many different avenues: peer-to-peer fundraising, door-to-door solicitations, lemonade stands and bake sales; their combined efforts constitute the primary source of funding for the JTI Fund. Kids who raised funds for the cause earned the title of “rock star.”

Rock star Ellie Kearns was one of JTI’s top fundraisers this year, raising over $2,700. Ellie and fellow racers Sophie Stein and Sydney Colella embraced the philanthropic spirit of JTI’s mission and got creative with their fundraising strategy. On their own initiative, the girls petitioned school administrators to grant them permission to raise funds for the triathlon through a school-wide bake sale. The school agreed to the idea, much to the delight of the student body. Within the first 30 minutes of the bake sale, the girls raised $430! Ellie was just one of 29 rock stars, each of whom raised more than $1,000. The top rock star honor went to Alexa Diaz who set a new JTI record by raising $6,500. Money from this year’s event will help families who are going through cancer treatment, as well as bring awareness to this important cause.

Please visit justtryanit.com to learn more about JUST TRYAN IT and how you can become involved in next year’s race as well as other JTI events and activities. Will McKinnon, JTI Board Chairman, presents the 2014 Top Fundraisers, who raised over

$1,000 each for the JTI Fund. From left to right, Katie Albert, Alexa Diaz, Jillian Wiener, Charlie DK Buckles and Thomas Ferris. Photo by Willy Hoffman, Jr.

Record-breaking Success: Fifth Annual JUST TRYAN IT TriathlonBy Katherine Potosky

Ryan Darby, left, of JUST TRYAN IT, and friend T.J. Celeste, right, spoke at the 2014 Pediatrics Gala. Photo by Leslie E. Kossoff

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Hitting the Books From Their Hospital Beds By Leah Giacalone

Every child deserves an education, something Linda Kim and her associates at MedStar Georgetown University Hospital believe wholeheartedly. And for the past two years, Kim, former Child Life Coordinator, and Matthew Dershewitz, Child Life Education Specialist, have been working tirelessly to provide hospitalized children education even though they can’t physically be in school.

As part of the hospital’s Child Life, Education & Arts Program, dubbed the Hospital School, children with extended stays at the hospital can stay on top of their studies. “It is easy for our chronically ill and frequently hospitalized patients to fall behind in school,” notes Kim. “Matt provides a critical service that is overlooked… A child’s job is mainly to go to school, and Matt provides that to our patients.”

Hospital School instructor Matt Dershewitz and his team of volunteers teach the kids, provide them with homework help, and coordinate with schools to get their assignments. Kim says of Matt, “He normalizes their environment while they are in the hospital and gives the

kids confidence when they do return to school.”

Impressively, Matt and his volunteers have helped 700 students and organized more than 1,500 hours of school visits! They are now working to expand the Hospital School by adding science, art and reading programs this fall.

The Hospital School is primarily funded by individual donors and grants including funding from Just

TRYAN IT and The Albert L. and Elizabeth T. Tucker Foundation (see related story on page seven). And the larger community gets involved by using the Giant Bonus Card Program. “We are so grateful for the generosity of Giant,” Kim says. “They have been supporting our Child Life, Education & Arts program for the past seven years and now have focused their charity on helping our Hospital School grow.”

With every use of the Bonus Card, Giant gives a portion of the purchase to the hospital. So far, the program has donated more than $7,000 to MedStar Georgetown pediatric care.

To register your Giant Bonus Card and support MedStar Georgetown visit the Giant website (giantfood.com/savings-and-rewards/rewards-program/aplus/) or call 1-877-275-2758 and use ID number 02837. If you have any additional questions about either the Hospital School Program or the Giant Bonus Card, please email Linda Kim at Linda.Kim@medstar.net.

Kayla, 13, also tackles her school work at the Hospital School.

Zoe, 15, is able to keep up with her studies while also receiving care at the MedStar Georgetown Pediatrics Department. Photo by Matthew Dershewitz

Alexis, 15, left, works on mathematics homework with the help of Hospital School volunteer Induja Maheswaran.Photos by Matthew Dershewitz

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But to be on the safe side, Amy also called her two brothers—both doctors—who told her to get a hand surgeon on the case.

The experienced team at MedStar Georgetown—home to a full range of services from primary care to the most advanced sub-specialties for adult and pediatric patients—had already anticipated that need. Soon after Danny’s arrival, Dr. Kessler was on the phone, learning the extent of the boy’s injuries and having him admitted on the spot. He arranged for urgent surgery the next day, working Danny into his already packed schedule.

And that’s when the memory of being a kid himself kicked in for Dr. Kessler.

“Starting movement as soon as possible after surgery is key to the best outcomes for such severe injuries,” Dr. Kessler says. “But most kids—especially 11-year-old boys—don’t know their limits or when to stop. Unless you immobilize them to protect them from themselves, they can cause more damage than good and put a full recovery at risk.”

So Dr. Kessler asked whether Danny “was the kind of kid who could sit still or needed to be encased in fiberglass,” Amy recalls. “Our answer earned our son a removable cast to keep him still when needed but also allow him do physical therapy.”

For three full hours, Dr. Kessler and his team worked to repair tendon and nerve damage to help Danny move his middle finger once again. By surgery’s end, Danny had endured 67 stitches and a skin graft.

After a one-night stay in the hospital’s pediatric unit, Danny began an intensive period of physical therapy, at-home exercises and frequent doctor visits. But he simply wasn’t making as much progress as expected. Dr. Kessler suspected that the tendons of Danny’s middle finger had fused with the skin graft and other tendons—an unfortunate but fairly common development that occurs 20 to 30 percent of the time. A subsequent, shorter outpatient surgery both confirmed and corrected the problem, leading to a full recovery.

Looking back on their ordeal, Eric says, “Dr. Kessler answered all of our

questions, including the barrage from Danny, every step of the way. His clear, thorough explanations of procedures and all possible consequences instilled great confidence among us all.”

Today, at age 14, Danny says, “It’s like it never even happened because I do everything I did before.” He’s on the tennis court for hours and plays clarinet, basketball and Frisbee. Inspired by his care—and his great relationship with Dr. Kessler—Danny now wants to be a hand surgeon when he grows up. His advice to other kids? “If something like this happens to you, I would say don’t worry. No matter how bad it looks, Dr. Kessler can fix it.”

Serving Patients the Best Hand Possible continued from page one

To schedule an appointment with a pediatric orthopaedic surgeon, visit MedStarGeorgetown.org/FindaDoc or call 202-295-0547.

With three active children, we’re no

strangers to the hospital’s Emergency

Department. In fact, we’ve been there

several times before and always with

excellent results.

Amy Schwartz

On vacation last summer on Martha’s Vineyard, Danny (center) clowns around with his sister Mimi and brother Sandy. Successful surgery by Dr. Kessler and a rehabilitation program repaired significant damage to the tissue and nerves in Danny’s right hand. Photo courtesy of Koenig family

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Neither did Shawn. Until that moment, he had never felt such sensations. In fact, up to that fateful day in August 2012, Shawn had been a healthy 17-year-old boy. They ended up just going home, and the next morning Donna took Shawn to their regular pediatrician, who ordered an X-ray. The results, Donna says, were more than a little surprising.

The pediatrician diagnosed Shawn with spontaneous pneumothorax, or a collapsed lung. A pneumothorax is a buildup of air in the space between the lung and the chest wall. As the air pressure increases, it pushes against the lung, causing it to collapse. That, in turn, causes shortness of breath and pains in the chest as the person tries to breathe.

“When the doctor called and said that Shawn’s right lung was 20 percent collapsed, I was shocked,” Donna says. “I couldn’t understand what had happened. I certainly didn’t expect this.”

Normally, a spontaneous pneumothorax can occur as a

complication from lung disease, such as asthma, emphysema, or cystic fibrosis. In some cases, it can occur spontaneously in previously healthy, tall, thin adolescent males, like Shawn, with no prior history of lung problems.

Referred to a specialistThe pediatrician referred the family to Jenny H. Lin, MD, a pediatric pulmonologist at MedStar Georgetown. After examining Shawn in the hospital’s pulmonology clinic, Dr. Lin confirmed the initial diagnosis and admitted him to the hospital.

“He was in a lot of pain,” Dr. Lin recalls. “The size of his pneumothorax was significant, and I knew that he needed inpatient medical management.”

Shawn was administered high concentrations of oxygen to help absorb the air from the pneumothorax and re-inflate his lung. His condition improved rapidly, and after a few days in the hospital, he was released.

Multiple recurrencesOver the course of the next eight months, Shawn’s condition returned; he was hospitalized multiple times for pneumothoraces in both lungs. In addition to receiving oxygen treatment, Shawn required several interventions, including insertion of chest tubes, video-assisted thoracoscopic surgery, and a partial lung resection.

“With a spontaneous pneumothorax, there’s an initial recurrence rate of about 50 percent, and the risk is highest in the first year,” explains Dr. Lin. “This was one of the most severe cases I have seen, and it required intensive treatment.”

According to Dr. Lin, when someone has recurring spontaneous

pneumothoraces, it’s important to evaluate for an underlying cause or predisposing medical condition, such as connective tissue disease or lung emphysema. She performed a thorough diagnostic evaluation but found only blebs, or air-filled blisters on the lung that, if ruptured, can cause the pneumothorax as air is released into the space around the lungs. Shawn’s blebs were removed surgically, and he received additional surgical treatment to prevent air from getting back into those spaces where it did not belong.

Each step of the way, Dr. Lin coordinated care among multiple departments (pulmonology, pediatrics, surgery and genetics) and ensured the family understood exactly what was going on and why things were happening. “We always try to help families understand and anticipate upcoming steps in treatment and recovery,” says Dr. Lin.

From normal to terrified to normal again, Shawn’s condition has stabilized. ”He has not had a recurrence since June of 2013,” confirms Donna. ”We were so proud to watch him graduate from high school. Now he’s completed his freshman year of college at Frostburg State University.

“This was a very scary time for us,” Donna admits. “Dr. Lin was so comforting and did a really good job. She was always available and made us feel as good as possible despite our fear. All of MedStar Georgetown worked so well together to get Shawn the care he needed.”

Teen Requires Extraordinary Treatment continued from page one

Visit MedStarGeorgetown.org/Pediatrics for more information about pediatric pulmonology. To schedule an evaluation with a pediatric pulmonologist, call 202-295-0547.

Shawn Zupancic can now breathe easier, thanks to the treatment and care he received at MedStar Georgetown. He enjoys going for drives in his Jeep, windows down! Photo courtesy of Donna Zupancic

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Dr. Shad and her team at MedStar Georgetown help children with cancers and blood disorders. Her multidisciplinary team includes pediatric oncologists as well as nurses, nurse practitioners, social workers and a chaplain who all specialize in oncology.

There is also a full nutrition program for children with cancer, and a wide range of sub-specialties as well as art therapy and child life therapists. “Our program is unique because of this complete range of services and our team approach that offers personalized attention to our patients,” Dr. Shad explains.

An array of specialists at MedStar Georgetown has provided the clinical care the Penkerts need to handle complications ranging from infections and blood clots to dislocated joints and illnesses requiring hospitalization.

The experience has inspired the Penkert family to give back. They speak as a family to medical students about their disorders, and Rachel used a Girl Scout project to raise $3,000 to create a library of 20 Kindles for young cancer patients at MedStar Georgetown.

Rachel received her own Kindle as a gift from a woman at her church during a long and challenging hospital stay. When she realized how it helped distract from her pain, she

decided she wanted to provide the same kind of gift for others.

“The Penkerts feel it is important to help others, and they have made a huge effort to do that,” Dr. Shad says. “They are always available to talk to any family who presents with these disorders. They go with me to medical school, and the way they choose to talk about their conditions has helped me educate so many medical students. They are a remarkable family.”

Now 14, 17 and 21, Hannah, Rachel and Sarah are doing well in school and are active in marching band, dance and Girl Scouts. But at any point, their lives can be interrupted. “It is like flipping a switch, and we can go from normal to having a reaction,” Jessica explains. Depending on the family member, those reactions can be anything from an anaphylactic episode

related to extreme food allergies to ending up in the hospital with respiratory distress.

Still, the family finds comfort in knowing exactly where they will go when the unexpected happens. They drive to D.C., despite the lengthy trip from their home in Sykesville, Md., about 30 minutes from the Pennsylvania border.

“A lot of people look at me and say, ‘You drive two hours for medical care?‘ And I always say,‘Yes, we do!’” Jessica says. “We are eternally grateful for the care we receive at MedStar Georgetown.”

From Mystery Illness to Medical Answers continued from page three

It is so reassuring to have a doctor

you can access easily and trust with

your children’s health. Dr. Shad and

her staff are the best at that.

Jessica Penkert

Thanks to Dr. Aziza Shad and her team, the Penkert girls actively participate in marching band and dance. Photo by Rick Reinhard

Visit MedStarGeorgetown.org/Pediatrics for more information about pediatric care. To make an appointment with a pediatric specialist, call 202-295-0547.

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Please submit your comments to:Karen Alcorn, Editor202-444-4658 or via emailkma5@gunet.georgetown.edu

MedStar Georgetown University HospitalHospital Administration3800 Reservoir Rd., NWWashington, DC 20007-2113

Richard Goldberg, MDPresident, MedStar Georgetown University HospitalSenior Vice President, MedStar Health

S. Joseph BrunoChairman of the Board, MedStar Georgetown University Hospital

Kenneth A. Samet, FACHEPresident and CEOMedStar Health

Editors Karen AlcornLisa Arrington

Managing EditorBen Waxman

DesignerLaura Sobelman

WritersTamara Katy, MDJennifer DavisLeah GiacaloneLaura MatheosHenry MortimerLeslie A. Whitlinger

Visit us on MedStarGeorgetown.org/Pediatrics

A MedStar Georgetown University Hospital Publication

MedStar Georgetown Pediatrics and Obstetrics & Gynecology at TenleytownMedStar Georgetown Pediatrics and Obstetrics & Gynecology at Tenleytown offers pediatric primary and specialty care, as well as obstetrics and gynecology services. Easily accessible by the Tenleytown Metro, our office works collaboratively with MedStar Georgetown University Hospital to provide you with complete and comprehensive care.

To schedule an appointment at the new Tenleytown location call 202-295-0547.

Welcome New PhysicianWe are pleased to introduce the following doctor who has recently joined the MedStar Georgetown Pediatrics team.

Pediatric Neurology and Sleep MedicineTemitayo Oyegbile, MD

To schedule an appointment, visit MedStarGeorgetown.org/ FindaDoc or call 202-295-0547.