MUSC Catalyst 8-14-2015

August 14, 2015

MEDICAL UNIVERSITY of SOUTH CAROLINA

Vol. 33, No. 49

Mom’s strength inspires at MUSC

By Dawn Brazell Public Relations

W

ith two boys already romping about her household, Johanna Helton figured she knew the ropes and was well prepared for her third son who was on the way.

Or so she thought.

When the Myrtle Beach mom, then 29, started to have contractions at 31 weeks, she went to be checked. Her doctors decided to have her transferred to the Medical University of South Carolina, which specializes in high-risk pregnancies.

“There’s a tendency to say it’s nothing,” she said, recalling that she thought it might just be a false alarm. Helton’s previous ultrasounds with her obstetrician in Myrtle Beach had not found anything amiss.

“I had that gut feeling, though,

that there was something wrong. I think parents have that intuition.”

When she arrived at MUSC, she spent the next three days with a whirlwind of specialists who were coming and going.

“I thought it was just some complication, and that he was going to be premature. I never knew life could get so complicated that quickly. It was all the teams that you could possibly think of that were trying to get answers to all these questions of why. These bands on the ultrasounds caught their eye, and they saw his jaw was clearly underdeveloped, and something was going on with his hands and arms.”

Helton, who is glad to hear about the official opening of an Advanced Fetal Care Center at MUSC, understands better than most about the value of seamless,

photo by Sarah Pack, Public Relations Johanna Helton cuddles with her son, Jaylen, who is doing well despite a premature See Mom on page 9 delivery and a wide range of health issues. (Spanish translation of story available)

New Advanced Fetal Care Center creates special, magic moments

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t’s noon and a variety of medical professionals fill the room to view some of the toughest and most complicated prenatal cases involving patients who soon will deliver at the Medical University of South Carolina.

These are not cheery cases being presented at the monthly fetal board.

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They are the ones that require the highly-specialized services of maternal fetal medicine (MFM) experts as well as neonatologists, geneticists and possibly pediatric surgeons and pediatric subspecialists.

The professionals study the projection of a fetal MRI, the fetus captured freeze-

Kids Eat Free at MUSC Summer meal program provides nutritious meals.

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frame in a black-and-white moment that reveals to trained eyes what a tough time he faces, even though he hasn’t taken his first breath.

Chris Goodier, M.D., an MFM specialist who is leading the discussion, gives a quick rundown of the findings about the fetus. Then he prompts the

group: “We need to get a delivery plan in place for this patient.”

A sense of urgency fills the room.

Like a team of detectives, various health professionals chime in with observations and questions. Doctors, including MFM

See Center on page 6

Camp Rise Above

2

Applause

Camp continues to support Lowcountry children with special needs.

5

Meet Bill

11

AMA Scholarships

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2 The CaTalysT, Aug. 14, 2015

Applause Program The following MUSC employees received recognition through the Applause Program for going the extra mile: Medical Center

Moya McFadden, Radiology; Jennifer Pierce, OB/GYN; Indrea Singleton, Revenue Cycle Operations; Brittany Pinckney, Registration Admin; Jackie Heyward, PAS; Maude Smith, ART 6 West; Cecilia Gillens, ART 6West; Fred Holston, ART 4East; Justin Ravenel, Guest Relations; Jonathan Hartman, ART 3West; Matrell McCray, Jr., Environmental Services; Savannah Zimmerman, 6East; Sheelah Gayo, 6 East; Breezy Bernheisel, 6West; Leslie Adams, STNICU; Jason Warren, MICU; Michael McFadden, Safety & Security; Rachel Pritt, 6East; Kimberly Egbert, Pulmonary, Critical Care, Allergy & Sleep Medicine; Natasha Smalls, PACU; Randi Gross, PACU; Jennifer McComiskey, 8West; William Moran, Internal Medicine; Sheila Scott, Outpatient Registration; Roberta Campbell, Meduflex Team; Barbara Busby, Guest Relations; Priscilla Peck, Revenue Cycle Operations; Brand Keith, Internal Medicine; John Richey, ART 4East; Jessica Alpert, ART 4East; Danielle Paquette, ART 4East; Regan Weston, Anesthesia and Perioperative Medicine; Nancy Waterhouse, Registration Admin; Jennifer Griffin, Women’s Services; Caroline Flowers, ART 3West; Gay Martin, Radiology; Shinika Phillips, Guest Relations; Jessica Benton, Meduflex Team; Erin Lickiss, Child Life Services; and Andrea Rentz, 7A

Editorial of fice MUSC Office of Public Relations 135 Cannon Street, Suite 403C, Charleston, SC 29425.

843-792-4107 Fax: 843-792-6723

Editor: Cindy Abole catalyst@musc.edu Catalyst staff: Mikie Hayes, hayesmi@musc.edu Dawn Brazell, brazell@musc.edu J. Ryne Danielson, daniejer@musc.edu Helen Adams, adamshel@musc.edu Sarah Pack, packsa@musc.edu Jeff Watkins, watkinsj@musc.edu

University Lisa Beattie, University Human Resources; Roxy Dugan Clark, University Housekeeping; Vickie Chapman, Faculty Dental Practice; Robert Davis, OCIOInformation Services; *Stephanie Dorst, Dental Faculty Practice; Emuel Green, Mail Services; Nicole Hill, University Human Resources; Ronald Horry, University Transportation; Darleen Hodgkins, Dental Faculty Practice; Gabriel Ingram, Dental Faculty Practice; Audrey Mack, University Budget Office; Angela Pinckney, Dental Faculty Practice; Beth Swain, Oral Surgery; Karen Turner, Family Medicine; Gustavo Villanueva, Public Safety; Vivian Wertz, Dental Faculty Practice; and Alvinia Wilson, Dental Faculty Practice *Received more than one nomination

MUHA PillAr AwArds

Easterling

Annual parking renewal due Renewal of annually expiring employee parking decals and hang tags will begin Monday, Aug. 17 and continue through Sept. 30.

Renewal may be completed online (through Sept. 18) or in the Office of Parking Management, 91 President Street (through Sept.

30).

For information and instructions for renewing online, visit http://academicdepartments. musc.edu/vpfa/operations/ Parking/2014%20Annual%20 Parking%20.Renewal.pdf.

The Catalyst is published once a week.

Paid adver tisements, which do not represent an endorsement by MUSC or the State of South Carolina, are handled by Island Publications Inc., Moultrie News, 134 Columbus St., Charleston, S.C., 843-849-1778 or 843-958-7490. E-mail: sales@moultrienews.com.

Ricciardone

Medical Center managers were recognized for their leadership, performance and accomplishments at the MUHA Leadership Development Institute meeting on Aug. 5.

Medical Center Executive Director and CEO Dr. Patrick Cawley and hospital leaders recognized first quarter managers for excellence with the Pillar Awards in five areas: Growth— Heather Easterling, PharmD, MUSC Pharmacy Services; Finance— Mike Ricciardone, Department of Radiology; Service—Jennifer Carullo, R.N., ART Ambulatory Care and Michelle Cooper, R.N., PediatricsHematology-Oncology; People—Linda McDonald, R.N., 10West Orthopedics Trauma; Quality & Safety—Deb Cassidy, R.N., 6East Transplant/ Nephrology/Urology and Elizabeth Crabtree, Library Science and the Center for Evidence-Based Practice. photos by J. Ryne Danielson, Public Relations

Carullo

McDonald

Cooper

Cassidy

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Kids eat free as MUSC offers summer meals By helen aDams Public Relations

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t was one of those moments that may not seem like much at the time, but ends up having a huge impact. Last fall, dietitian Debbie Petitpain was at an obesity conference in Columbia when a speaker pointed out that no hospitals in South Carolina have summer meal programs for kids — even though there’s funding for them through the U.S. Department of Agriculture.

“I was sitting in the audience thinking, we are MUSC. We’re a fantastic cutting–edge facility, and I work for Sodexo,” Petitpain said. “We serve 45 million customers around the world every day. Between the two of us, we can surely figure this out.” Sodexo is the food service provider for MUSC, and Petitpain is its wellness dietitian at MUSC. That moment was the starting point for Kids Eat Free at MUSC, a groundbreaking idea that could have a national impact by creating a blueprint for hospitals across the country to follow.

The concept is simple: Feed children for free during their summer break, which some schools, churches and other kid–friendly places are already doing.

It’s a way to make sure kids who qualify for free or low–cost school meals get nutritious food during the summer, too.

But Petitpain was stunned to find how rare summer meal programs are for medical centers. “We’ve been able to find a couple of hospitals in other parts of the country doing something similar, but not the same model we’re doing. So we were really just figuring it out as we went along,” Petitpain said.

With Kids Eat Free at MUSC, children don’t have to sign up or prove they qualify for free meals. The reason: MUSC qualifies as a USDA “open site,” because about 90 percent of kids who go to nearby public schools qualify for free or reduced price meals during the school year.

The MUSC summer meal program is open to anyone 18 or younger. Kids choose from the healthy breakfast and lunch food options covered by the program with the help of servers who know what’s covered under USDA nutrition guidelines, then look for

cashiers wearing purple octopus pins and go through their checkout lines. The kids eat in the dining area.

Kids Eat Free also serves children who aren’t able to come to the cafeteria for health reasons. That includes sickle cell, hematology and oncology patients.

Instead of going through the cafeteria line, they get lunch bags.

Rachel Darling, a rising third-grader who spends hours at MUSC every week for leukemia treatments, showed off her lunch during a recent appointment. “I like the chocolate milk,” she said. She also liked the turkey sandwich, graham crackers and celery with ranch dip.

Her mother called the program awesome. “Some days we come in and get blood work and we’re able to leave, but if we have transfusions, the visit turns into six hours,” Lisa Darling said.

“It’s hard to know whether to pack a lunch or not. This takes some of the stress off of me, getting ready and getting out of the house in the morning.”

The program’s come a long way since Petitpain came up with the idea last fall.

She knew she needed a lot of help to pull it off, so she enlisted MUSC’s director of Health Promotion, Susan Johnson, Ph.D. Johnson immediately saw its potential for kids who rely on free school meals and go hungry during the summer. “I think if they aren’t in a school–based setting such as camp, they struggle,” Johnson said. “Having somewhere they can go where they know they can get a meal is huge for them, especially within walking distance.”

Johnson approached hospital administrators to make sure Kids Eat Free at MUSC had their support, because the program would need the help of everyone from cafeteria workers to the people in charge of retail.

The support was there — in a big way.

MUSC created a 12–person advisory board to work with the Kids Eat Free team as it set up the program, and campus leaders gave it their full backing.

Anton Gunn, executive director of community health innovation and MUHA chief diversity officer, said the program is a way to support families inside and outside the hospital. “We have to find ways like this to connect and meet the needs of the entire

photo by Sarah Pack, Public Relations

Patient Rachel Darling digs into her Kids Eat Free at MUSC lunch during an appointment. community,” Gunn said.

With that vote of confidence, the Kids Eat Free at MUSC team got to work. It had to find a way to ensure the summer feeding program Gunn wouldn’t disrupt normal operations in the MUSC cafeterias, which serve thousands of people each day, including doctors, nurses and patients’ families.

It also had to find food that satisfied USDA nutrition guidelines — and fell within its budget. “It needed to be financially sustainable,” Petitpain said.

“We needed to make sure this wouldn’t financially strain us, let alone cost us anything.”

By launch day, everything was in place.

Petitpain had no idea what to expect.

“The first day, we had 10 kids.” The numbers gradually grew as word got out.

By the third week, about 190 kids took part. Unlike some programs, where organizers know exactly which children are receiving free food, this one does not have to collect information about

participants, thanks to the area’s high need designation.

“What I love about our model, where the children are going through like regular customers, is they don’t stand out. They’re just kids coming in to eat lunch, regardless of who’s paying for it,” Petitpain said.

They’re also being exposed to different types of food. “They can try things like quinoa stuffed peppers. They get to choose,” Petitpain said. “So often when you’re in an assistance program, you get what you get. We love that they get to make a choice.”

Kids Eat Free at MUSC ends August 14, but the general manager of MUSC’s Food and Nutrition Department said it will be offered again next summer. “I think it certainly was a success,” Brad Masteller said.

Petitpain hopes that success will inspire other hospitals. She and her team at MUSC designed Kids Eat Free in a way that can be replicated, creating the guide she once assumed was already out there.

“Hospitals need to do this,” she said. “It’s a no–brainer, and it’s not that difficult.” She’ll have some help spreading the word, thanks to a report about the program in the works by the national organization No Kid Hungry.

4 The CaTalysT,Aug. 14, 2015

Laptop, portable computer encryption is campus priority OCIO launches an initiative to encrypt all MUSC laptops by the end of 2015

By J. ryne Danielson Public Relations To meet state and federal security requirements and protect sensitive data at the Medical University, the Office of the CIO has begun a project to encrypt all MUSC–owned laptops and portable computers by the end of the year.

Encryption is a method of encoding information to make it unreadable to anyone without a secret password. A hacker attempting to access data from an encrypted computer would see only seemingly–random gibberish, while authorized users could use the device normally.

“Encryption is important for many reasons,” said John Rasmussen, chief information security officer. “It helps MUSC protect any sensitive data that might be intentionally or accidentally stored on a device by making it unreadable to individuals who might acquire or steal these devices. In addition, various federal laws and the state of South Carolina require the encryption of sensitive data.”

Sensitive data includes personal information that could be used by

hackers to steal one’s identity: social security numbers, driver’s license numbers, bank account or credit card numbers, as well as security codes or passwords that would allow unauthorized access to a user’s accounts. It also includes protected health information — patient records that are individually identifiable, including medical history, treatment information, health insurance or billing information.

Patient and student information is protected by the Health Insurance Portability and Accountability Act (HIPAA), the Family Educational Rights Privacy Act (FERPA), as well as South Carolina and MUSC information security policies.

“Our patients, employees, students, research subjects and others trust us to protect their sensitive data,” said Robbie Townsend, manager of desktop and endpoint security services. “Encrypting the data stored on computers is the single most important step we can take to protect that data in the event the device is lost or stolen.”

While data security is important on all devices, Townsend said, it is critical for portable ones. “MUSC's data needs

photo provided

BitLocker and FileVault will be used to encrypt MUSC laptops. This software encodes information to make it unreadable to anyone without a password.

“Our patients, employees, students, research subjects and others trust us to protect their sensitive data.”

Robbie Townsend protection wherever it goes. Computing equipment — including laptops, smartphones and tablets — must be encrypted to provide that protection.”

Two years ago, OCIO began a multi– pronged approach to securing data stored on or accessed from portable devices. The first phase was securing smartphones and tablets using Mobile Device Management (MDM). The second phase was the implementation of Two Factor Authentication (2FA). Phases one and two have been successfully completed and OCIO is beginning the third phase of the project: encrypting data on laptop computers.

Two encryption systems will be the

cornerstones of this initiative: Bitlocker, for Windows PCs, and FileVault, for Macs. These centrally–supported encryption solutions will ensure standard practices across the enterprise and allow for passwords to be recovered if lost or forgotten.

OCIO expects the impact on users to be minimal. While initial encryption may take some time and slow performance for a few hours — depending on the speed and size of the hard drive — once the initial process is complete, performance should return to normal. Users will be required to set 6 to 20 character passwords which will unlock the computer when powered on or rebooted. After entering this password, users will interact with their computers as they always have.

Most users will be able to encrypt their laptops themselves by visiting: https:// sp.musc.edu/ocio-is/infrastructure/ est/Pages/laptopencryption.aspx.

Simply select the appropriate operating system and follow the point–by–point instructions. A FAQ and troubleshooting guide are also available.

For questions related to encryption, contact the endpoint security team by email (encrypt@musc.edu) or call IT support services at 792-9700.

The CaTalysT, Aug. 14, 2015 5

Meet Bill

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6 The CaTalysT, Aug. 14, 2015

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specialists and neonatologists, and neonatal ICU nurses ask a battery of questions, all weighing in on what they think would be the best course to give the baby a fighting chance and provide the best care for the mother.

A newcomer in the group tracking all of the comments is Becky Dean, R.N. She’s one reason attendance at this meeting has been on the rise. As the new coordinator and patient navigator for MUSC’s Advanced Fetal Care Center that officially opened July 8, she is working with families to navigate the complex medical world of specialty care they will need.

Most parents have no idea what goes on behind the scenes at academic medical centers that specialize in prenatal and neonatal care, she said.

And why should they?

Everyone hopes for the picture-perfect type of birth, but as Dean knows better than most from her experience as a former neonatal intensive care unit nurse, many don’t get it. MUSC’s NICU admits about 900 babies a year, a large patient volume that requires a depth of expertise from the specialists on board tasked to intervene in a critical period in a family’s life.

Goodier said the center already is making a difference. MUSC has been able to bring MFM and pediatric cardiology together two days a week during the past several years, and it has led to greater patient satisfaction and better-coordinated care for babies with congenital heart defects.

“The development of a fetal care center takes this a step further with the goal to bring all disciplines together allowing patients to be seen by each appropriate subspecialty at the same visit,” he said.

It also augments the work of the fetal board. He recalls a recent case involving a patient with a possible inherited disorder that required close coordination among MFM, the NICU, pediatric hematology, the laboratory, Level 1 and Level 2 nurseries, labor and delivery staff and postpartum staff.

“The fetal board was used as an avenue to coordinate this case over several meetings with sub–specialists invited to

photos by Sarah Pack, Public Relations Dr. Sinai C. Zyblewski, a pediatric cardiologist, reviews a case. is to ease the shock and provide a one– help develop a plan that was placed in stop point of care so parents won’t be the patient’s chart and communicated so overwhelmed. Seamless, integrated among teams to ensure that all aspects care gives the mother and child a better of care were coordinated to prepare for outcome, she said. delivery and postnatal care.”

“I have a true passion for neonatal Dean now is a part of the process, ICU. That’s where I started, and I stepping in to ensure the family loved it. I really enjoy working with the understands what’s going on and babies, but I also enjoy working with relaying important decisions to MUSC the families, and I found I just have a staff that will streamline care. knack of helping them work through What attracted Dean to this new job, the process — helping them understand pulling her away from her love of caring what’s happening with the baby,” she for babies in the NICU setting, was said, adding that she knows the medical one defining moment. She was working aspects of the NICU world and can nights at a Florida hospital as a bedside translate what the physicians are saying. nurse and got a call from labor and “I can give them a realistic idea as far delivery that a baby was coming in with as what to expect, types of pitfalls and gastroschisis. That is a birth defect that just be a support to them.” allows the baby’s intestines to protrude outside of the abdomen through an BirtHing Better OUtcOMes opening beside the belly button.

Patricia Condon, RN, a nurse “We went through all these bumbling manager who’s very excited about the steps to get a surgeon to the bedside, to center, said one of the goals is to raise get the baby intubated right away with awareness about better prenatal care so very little notice. I looked at her charts that patients get into the system sooner. and saw the baby had been diagnosed For example, very few of the babies with weeks before, but the NICU staff who heart problems in the state are diagnosed would be receiving this baby and caring prior to birth. for her didn’t even know.”

“If they are, then a better delivery and In Dean’s eyes, that shouldn’t happen, post–delivery plan can be developed, especially since she knew that any particularly if surgery will be needed,” delay could negatively affect that baby’s she said.

“What is happening outside long–term outcome. She set out to of MUSC oftentimes is that the baby is pioneer what is now a thriving Perinatal diagnosed several days after birth, and Navigation program at her previous it’s an emergency situation, and now facility and plans to do the same at the baby is in a compromised position.

MUSC. The earlier the diagnosis, the better the Parents never want to learn their child outcome.” has a serious defect, but if that’s the case No one knows that better than Sinai they should be getting extra support.

Zyblewski, M.D., MUSC Health’s Dean’s job as the center’s coordinator

director of fetal cardiology, who has pioneered efforts to establish the center.

A vocal advocate, she’s already seen the difference the center can make in the quality of life for patients and their outcomes.

As fetal diagnostic technology continues to improve, the pediatric cardiologist plays an increasingly larger role during the prenatal period, she said.

A prenatal diagnosis of congenital heart disease is critical for appropriate delivery planning and a smooth transition from the fetal to postnatal environments, she said. That means there can be an organized delivery plan at a pediatric cardiac surgical center that optimizes a baby’s chances of entering surgery in the best state of health possible.

“Also, when parents are able to start grappling with the complexities of congenital heart disease before the baby is born, they seem to be more emotionally resilient and focused once the baby is born,” Zyblewski said.

Despite the advances in ultrasound technology, the state continues to face challenges reaching underserved regions, resulting in lower rates of prenatal detection of complex congenital heart disease. She hopes the center will raise awareness about the importance of high–quality fetal diagnostic imaging and ultimately will improve access to high– quality diagnostic services for patients living in underserved regions.

Zyblewski said the center has made it easier to take the interdisciplinary approach to patient care that always has been a goal at MUSC, but that has logistically been hard to accomplish in some ways without having a designated center. The center, which for now houses six clinical rooms, is a stepping stone to the expansive maternal–fetal and NICU areas that the new MUSC Shawn Jenkins Children’s Hospital will house when it opens in 2019.

By the time the new hospital is open, MFM and pediatric specialists at MUSC will have this new interdisciplinary model fine–tuned, which is a win–win situation for patients and medical staff.

The model encourages the sharing of new and valuable perspectives and offers a larger clinical scope, she said.

“It helps us keep sight of the larger

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forest through the trees. In general, I think an effective interdisciplinary model strengthens the collective intellect of a group and creates an environment for innovative solutions and thinking.”

Becoming a parent to an infant with complex congenital heart disease is often the most difficult life experience for people, Zyblewski said.

“It is scary, uncertain and overwhelming. When the medical issues are complex, effective and consistent communication is critical so that care doesn’t become fragmented or confusing. ” cOllABOrAtive cAre In addition to pediatric cardiology, MUSC has more than 30 pediatric subspecialists, including in the areas of urology, general surgery and neurosurgery. Dean’s job is to pull together the relevant specialists so parents, many of whom may be from out of town, can in one visit get updated on their baby’s diagnosis, discuss a delivery plan with their doctors and tour the NICU if desired.

Part of that process involves getting the best diagnosis possible.

MUSC’s center has advanced diagnostic capabilities, including fetal MRI. Radiologist Meryle Eklund, M.D., said a fetal MRI can be performed after a problem is detected during a prenatal ultrasound. This type of imaging can be used to confirm an abnormality, describe it in detail and provide vital information used by a multidisciplinary team to provide care for both the mother and the baby.

Fetal MRI often provides more anatomical detail than that offered by ultrasound alone and can contribute important information to determine what type of care will be needed and whether delivery should occur in a highly–specialized care facility designed to handle high– risk pregnancies, she said.

Dean said what many parents fail to realize is that it’s not just the specialized equipment that makes for an accurate diagnosis. It’s also the expertise of the imaging staff. Patients who come to the center for their ultrasounds get two sonographers, one who specializes in obstetrics and another in fetal echocardiogram ultrasounds. There’s also a pediatric cardiologist watching it in real time.

“Because of the volume of high–risk patients we see, our sonographers are very skilled at this. Not all sonographers are the same. Because of that constant exposure and honing their skills, they are expert at it.”

This is critical because researchers have identified thousands of different birth defects. Currently, birth defects are the leading cause of death for infants during the first year of life. Major structural or genetic birth defects affect about 3 percent of births in the United States and are a major contributor to infant mortality.

About 70 percent of these major birth defects are

Tammy Churchill, a registered diagnostic cardiac sonographer, performs an echocardiogram ultrasound on Miranda Pace. ultimately unexplained or not predicted based on the medical history of the mother or father. For those who care for these babies, the statistics aren’t a shock.

For families not expecting to become a statistic, though, it’s another matter. When the unexpected does happen, it makes a difference being in a center that specializes in high–risk pregnancies and neonatal care.

David J. Annibale, M.D., the director of both the Division of Neonatology and the South Carolina Neonatal Medicine Consortium, said large centers that care for more than 100 very low birth weight babies a year have significantly better survival statistics than centers with fewer than that number. A newborn’s odds of dying can be as much as five times greater in a low– volume NICU. creAting MAgic But even in a center that specializes in caring for high–risk pregnancies, there can be fatal genetic defects and illnesses. Dean said she’s there for whatever the outcome is. The center also will work with the new palliative care center that is opening this month at MUSC, to provide consults ranging from pain management to grief counseling. She helps families find closure if they are having to grieve the loss of a baby.

“It’s taking parents who think they are in a completely hopeless position and giving them that moment — that time with their child, whether they live for a couple of hours or for several days, you’re affecting the rest of their life. You’re taking what is a horrible, negative moment in their life and making it into what can be a potentially beautiful memory for them.”

As a new mom herself, Dean said she sees her role as that of a compassionate guide, and she understands better how important her role is. “I know if I were a new mom and had something like that going on, it would mean the world to me to have that support.”

Advanced Fetal Care Center coordinator, Becky Dean, R.N., (left) discusses a case with Patricia Condon, R.N., and Frances Woodard, a nurse practioner (right).

In the few weeks she’s been on board, she’s already seen a difference.

“The other day, I felt my heart swell with emotion.

In a short time, we put together a consult with a family who had a guarded prognosis. They had just gotten their full diagnosis and, within the hour, and we had a pediatric cardiologist drawing a diagram and an MFM specialist there. We had a neonatal team there and discussed as a group in real time the best time of delivery for the best outcome for the mom and the baby.”

With a high–risk baby who will require a high degree of care, it’s essential to plan a controlled delivery and get families connected to the right specialists.

“For parents to get a devastating diagnosis and have to wait three days to see their MFM specialist, it can seem like forever. Nobody wants to wait. It’s torture,” Dean said.

Doctors and staff like the new model as well.

Condon, a nurse manager who’s been at MUSC for 21 years, said the center is generating excitement among the staff because it makes it easier to integrate care.

She recalls the reaction of Frances Woodard, a pediatric nurse practitioner and coordinator for pediatric cardiology services, who observed one of the first days in the clinic. There was an appointment that involved a family, Dean, a pediatric cardiologist, an MFM specialist and a neonatologist in the same room, at the same time, which is not an easy feat in a large academic medical center.

Condon said they helped the parents understand the complexities of the situation and develop a unified plan. They brought clarity and comfort at a time it was critically needed.

“I think how she summed it up says it all. She said, ‘This is a little bit of magic going on here today.’ She was right, and that magic keeps happening.”

8 The CaTalysT, Aug. 14, 2015

Camp ‘rises above’ in fun activities for special needs kids By alex JaCkson

Camp Rise Above founder and nurse Barbara Fenton, second from left, leads a group of campers through an interactive activity with campers and counselors. This year, Camp Rise Above hosted six camps for Lowcountry children living with heart and kidney disease, sickle cell disease, brain tumors, asthma and other medical conditions.

Special to The Catalyst

S

plashing in the pool and scaling the climbing wall are among the activities many children look forward to during summer vacation. However, some young kids may not have the opportunity to participate in such activities due to lack of support or resources.

Camp Rise Above fills the void as it provides “lifechanging camp experiences to children with serious illnesses, life challenges and disabilities,” according to Barbara Denton, R.N., founder of Camp Rise Above.

Denton added, “We want these children to experience the magic of childhood regardless of their medical status.”

The camp strives to help children identify with their own unique strengths instead of their weaknesses. This year, six camps were held at James Island County Park and served children with heart and kidney disease, sickle cell disease, brain tumors, epilepsy, Tourette's syndrome, traumatic brain injuries, asthma and cerebral palsy. Denton said, “We have medical staff at every camp so we can provide these children a medically safe environment at which to have fun.”

Eight-year-old Ja’Den Farrell, who has sickle cell disease, enjoyed his second year at camp. His favorite

Ja’Den Farrell, 8, center, joins other campers as they try out the Portable Climbing Wall at James Island County Park.

photos by Alex Jackson

activities were swimming and going down the water slides. Other campers enjoyed singing camp songs, archery, fishing and pond poking, which is where they collect small water creatures in nets and look at them under a microscope. Many of the campers participated in these activities for the first time.

Denton enjoys seeing the children participating in new activities. “We had one child who is a quadriplegic and had never been in a pool or gone down a waterslide,” she said. “He did both and the smiles and screams were priceless!”

Executive director Erin Ulmer said, “It is always very emotional and empowering to see campers try new things. The pure joy on their faces when they accomplish a new task is the reason I do what I do.”

She continued, “Our partnerships with the Charleston County Park and Recreation Commission and MUSC have aided greatly in our ability to serve children from around the state, and these relationships are crucial to our continued success.”

Organizers have also designed a program to bring the Camp Rise Above experience to children who may be unable to come to them, such as kids undergoing treatments or surgery in the hospital. Camp Rise Above in the Hospital, as the program is known, visits MUSC as well as children’s hospitals in Columbia and Greenville.

Denton and Ulmer envision a bright future for the camp. Their dream is to build a camping facility with cabins in Charleston that will serve children from all

over the state with medical issues.

For more information about Camp Rise Above, visit http://www.campriseabove.org/.

Editor’s note: Alex Jackson is a research assistant in the College of Health Professions.

Farrell, who has sickle cell disease, enjoys a ride down one of the tube slides at Splash Zone Waterpark at James Island County Park.

The CaTalysT, Aug. 14, 2015 9

mom

Continued from Page One

coordinated care for babies born with congenital defects. MUSC’s neonatal intensive care unit (NICU) admits about 900 babies a year, a large patient volume that requires a depth of expertise from the specialists on board who intervene during this critical period in a family’s life.

Even though it was overwhelming to have so many specialists working with her, Helton said she was glad they were there to make sure that Jaylen could get the treatment he needed immediately after birth.

Amid consultations with pediatric subspecialists, including a cardiologist who wanted to do an echocardiogram of his heart, Helton was seeing a lactation consultant and being prepared for what having a baby in the NICU would be like. She took an NICU tour and tried to mentally prepare for what was coming.

The night before Jaylen was born, the Heltons got more bad news. Her son also had a common heart defect. “I was sitting on the ultrasound table not even knowing what an echo was,” she said.

“I knew something was wrong when the doctor came in. He said he was sorry to have to tell me that Jaylen had a heart defect, and he would possibly need open heart surgery at birth. There was a risk of him not surviving.”

Helton, whose husband was at home caring for their other children, burst into tears. “I was crying here in front of a stranger.”

Her family rushed back to help her, and she consulted with Chris Goodier, M.D., a maternal–fetal medicine specialist, who laid out the options.

“I call Dr. Goodier our first miracle,” she said. “He made the first call not to let Jaylen go into distress. A lot of other doctors in other cases I’ve heard will keep the baby so it will keep growing, but I think he spared Jaylen a lot more hard work and distress. Knowing to intubate him right away and things like that gave him a better start.”

Another miracle came in that doctors were able to detect his heart defect before he was born. Some babies can go for years before they get diagnosed or the baby can be born in distress, struggling to breathe, she said.

“Their first breath is so important. It’s important that it is the right one.”

Johanna Helton

Helton said she’s glad her son Jaylen is a fighter.

“You need to know and be more aware when they are in the womb that they are going to need some serious intervention at birth to be able to survive. It can make a world of difference.”

Helton needed every advantage she could get. To make matters worse, excessive rain was causing flooding in Charleston. Extra efforts had to be made to get the right staff ready for her delivery March 29, 2014, including an NICU team, an ENT (ear, nose and throat) physician to handle opening Jaylen’s airway and a pediatric cardiologist.

“They were ready for him and for anything that might happen. Dr. (Chris) Discolo mentioned Jaylen was the hardest baby he’s had to intubate. He said he’ll forever remember Jaylen for that — giving him trouble already,” she said, laughing.

Jaylen, who was breech and weighed 3 pounds, 8 ounces, would eventually be diagnosed with Nager syndrome, a rare condition that mainly affects the development of the face, hands and arms. Helton said it has been a long, hard journey for them all, but fortunately her son seems to have a strong will.

“He’s baby Hulk, and I’m mommy Hulk,” she said of their nicknames. “You wouldn’t know how sick he is if you can

see him fight.”

Jaylen received a tracheostomy, or breathing tube that is placed in the neck, at 2 weeks old and had his first openheart surgery on June 11. He’s been admitted several times since, including to be treated for flu and pneumonia.

Despite all the procedures and specialists, Helton made sure she carved out bonding time with her son. She learned an important lesson during that period. “I had to learn unconditional love — a whole new bond — with my child. It was knowing that God is in control and that he doesn’t make any mistakes.”

One of Jaylen’s doctors, Sinai Zyblewski, M.D., a pediatric cardiologist, said his mother is an inspiration. Her son will continue to require care, including additional cardiac interventions, ENT surgeries and orthopedic care. The pediatric occupational, speech and physical therapy teams also are heavily involved.

“Despite his multiple congenital anomalies,” she said, “Jaylen has truly thrived and is doing very well because of his great parents and the multidisciplinary teams.”

Having good days and bad, Helton said she’s learned to take it one day at a time. Her son faces hand surgery this

summer and then jaw surgery when he’s 2 or 3 so he’ll be able to get the breathing tube removed from his neck.

She looks forward to being able to hear him talk and laugh.

“In this year I have learned more than I have ever learned in my entire life about things you really didn’t sign up for. You think, I wasn’t supposed to be a nurse, but as a parent you’re everything, and for that child you just will do anything.”

Her husband, Perry, is a school teacher and has been very supportive. They have a nurse who helps them care for Jaylen so they can have time to spend with their other sons. Helton just looks for something each day to be grateful for, she said.

“You just have to focus on that. Your baby is going to focus on your energy.

Whatever you are, your baby is going to be. That’s what I have learned, too. You have to be strong. God put you in that situation for a reason, and you just got to be strong and inspire others who are going through something worse because there’s always someone who’s going through something worse.”

Her advice to other parents is to get good prenatal care, get second opinions and to follow their intuition if they think something might be wrong, especially when it comes to their baby’s future.

“Just giving them a good start is critical.

Their first breath is so important. It’s important that it is the right one.”

Contact MUSC’s Advanced Fetal Care Center at 792-4477. To see the Advanced Fetal Care package, visit www.musc.edu/pr/newscenter/2015/ MUSC-advanced-fetal-care-center.html.

Read this story in Spanish, visit www. musc.edu/pr/newscenter/2015/Heltonsprenatal-care-espanol.html.

10 The CaTalysT, Aug. 14, 2015

Kitchen 208 coming to MUSC salad or a whole fruit Join Sodexo Chefs in the and enter a drawing Main Cafeteria on Aug. 19 for a chance to win an from 11 a.m. to 1 p.m. as they iPad. One winner will be prepare dishes from the popular selected from combined lower King restaurant, Kitchen entries from both 208, as part of the Local Chef series. Sodexo wellness dietitian cafeterias Aug. 1 to Aug. Debbie Petitpain took two of 31. the restaurant’s most popular q Employee Fitness dishes and performed a “recipe Series: 4:15 to 4:45 p.m., makeover,” by making some Aug. 19 — Body Bar: Use adjustments. She created a more a bar for weighted exercise Susan Johnson “Mindful” version without movements — Great total compromising the flavor. Mindful body training. Class will

by Sodexo, available in the be led by Katie Blaylock MUSC cafeterias, offers nutritious of the MUSC Hman Performance Lab. foods, cooked with savory herbs and Free day pass to the MUSC Wellness spices and only a little salt or fat, which Center for participants. Register at musc. creates an indulgent way to enjoy edu/ohp/musc-moves/employee-fitnesshealth. Enjoy more choice, more food, signup.html fewer calories and the confidence of q Worksite Screening: Friday, Aug. eating well. www.Mindful.Sodexo.com.

28, Wellness Center Auditorium. This Chef Marc Collins, who is the chef screening is available to employees with at Circa 1886, will greet customers and the State Health Plan (including the answer questions. The two featured MUSC Health Plan). Employees and menu items include a quinoa salad spouses can participate for $46. with Mediterranean vinaigrette, served Register at musc.edu/ on a bed of spring mix with kale for employeewellness/2015Worksite $3.99 and a smoked turkey wrap for Screening. $3.59 — add a bag of baked chips and q Chair massages: Free massages bottle of water for $1.50 more. Samples are offered to employees midday and copies of the recipes will also be Wednesdays. Check Broadcast Messages available. for new locations and times.

To further promote Mindful q Farmers Markets: Fresh fruits and choices, enter for a chance to win an vegetables are available from local iPad donated by Pepsi by purchasing farmers Friday from 7 a.m. to 3:30 p.m. a Mindful entrée or a piece of whole at the Horseshoe. Look for our returning fruit and a calorie free Pepsi beverage vendor, Angel Blends (including their new product, PACt, q Kitchen 208 Local chef event — 11 or Aquafina water) through the month a.m. to 1 p.m., Aug. 19 at the University of August. Simply add a name, phone Hospital cafeteria featuring recipe number and email to the back of the makeovers such as tri-colored quinoa receipt and drop it in the raffle box. salad with Mediterranean vinaigrette and One winner will be randomly selected smoked turkey wraps. Recipes, discount from entries at both UH and ART. coupons will be available.

Health at work

Employee Wellness

q August Monthly Mindful Challenge — Do a gut check and try foods that promote a healthy gut flora. Begin by taking the challenge’s first survey at http://tinyurl.com/nrswyzx. A link to the final survey will be sent at month’s end to those who take the first survey. q Sodexo Cafeteria Promotion — through Aug. 31; Buy a PACT, Aquafina or zero calorie Pepsi bottled beverage with either a Mindful entree

MUSC Urban Farm

q Lunch and Learn — 12 to 12:45 p.m., Aug. 20: The Art & Science of Kombucha; samples and recipes will be available q Early Bird Maintenance — 7:30 to 8:30 a.m., Wednesdays q Sunset Work and Learn — 4 to 5 p.m., Thursday q Saturday Work and Learn — 9 to 11a.m.

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The CaTalysT, Aug. 14, 2015 11

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All other classifieds are charged at rate below. Ads considered venture-making ads (puppy breeder, coffee business, home for sale, etc.) will be charged as PAID ADS •• PROOF OF ELIGIBILITY REQUIRED * NO MORE THAN 3 LINES * FREE ADS RUN 2 WEEKS ONLY!

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Medical students awarded scholarships

By J. ryne Danielson Public Relations The American Medical Association Foundation presented its Minority Scholars Awards in May to two MUSC students, Denise Kimbrough and Kendrick Kennedy, both of whom were completing their second year of study in the College of Medicine.

In an effort to promote diversity, fight health care disparities and alleviate the high cost of medical education, the awards recognize scholastic achievement, financial need and commitment to improving minority health among first– year or second–year students from groups historically underrepresented in medicine.

Funded through partnerships with Pfizer, the National Kennedy Business Group on Health and the Association of Black Cardiologists, as well as through private donations, 2015 marks the eleventh year of the scholarship program.

According to the AMA, today’s medical students graduate with $176,000 in debt on average, though in individual cases, it can be much higher. For this reason, the group has made helping students tackle the rising costs of education a priority.

For Kimbrough and Kennedy, this help is greatly appreciated.

“In my life, I have heard all too often ‘that’s not possible,’” Kimbrough said. “Yet, after each occurrence, somehow, and with the help of people who saw my potential, I was able to overcome. Medical school was no different. In the poem, ‘Alone,’ Maya Angelou said it best: ‘Nobody, but nobody can make it out here alone.’

This scholarship reinforces that I am not alone in my desire to help because there is someone who believes in my dream of being able to help those who need it most.”

Kimbrough based her decision to attend medical school not only on her desire to serve others, but on personal experience. “My grandfather had multiple heart attacks when I was a child,” she said, “which sparked my interest in the cardiovascular system. It was an encounter my family had with his cardiothoracic surgeon that made me choose medicine. I would sit and listen to his doctors explain the procedures and the expected outcomes. Yet, what stuck out the most was, after each visit, his surgeon would sit with our family and insist that my grandfather needed a good primary care physician and cardiologist to follow up with.

“He could have chosen to just continue to see my

grandfather and perform surgery after surgery, but instead he saw a man who lacked good preventative care. He made a suggestion that was not beneficial to him as a surgeon, but instead was the right choice for his patient. This simple act showed me that regardless of the consequences to your career, the goal is to improve the health of your patient. In other words, ‘first do no harm.’ In that act, I could see myself, and I knew medicine was for me.”

Kennedy, who also intends to specialize in cardiology, views the scholarship as a “gift of trust” that he must live up to. “I will do my best to become a prudent, safe and responsible physician who seeks to uphold the public trust,” he said. “This scholarship represents the idea that the committee believes in my ability to attain my goals and, ultimately, become a physician who seeks to be an asset to the community in which I serve.”

Kennedy noted that his interest in medicine also started with his grandparents. “As I followed my grandparents on their various hospital visits,” he said, “I was intrigued by the actions of their health professionals, and I persistently asked questions as to why the doctors and nurses did certain things. I also began to inquire about the anatomy and physiology of the human body. Like many Americans, my grand– dad suffered from hypertension, diabetes mellitus and congestive heart failure, which required frequent hospital visits.

“Ultimately, complications from these diseases took his life in the fall of 2003. During his last days, I noticed the intensity with which the physicians worked to preserve his life and, in those moments, my desire to become a physician was solidified. I was able to recognize the marriage of human interaction and skillful knowledge of human anatomy.”

This idea brought to mind for Kennedy a quote from William Osler, one of the founders of Johns Hopkins Hospital: “The good physician treats the disease; the great physician treats the patient who has the disease.”

Kennedy believes the physicians who treated his grandfather exemplified this quote, and he hopes to as well.

Now thirdyear medical student Denise Kimbrough received the AMA Foundation Minority Scholarship Award in May. photo provided

12 The CaTalysT, Aug. 14, 2015

sHOts witH A sPin tOUrney

photo by Alex Jackson

The Fourth Annual Shots with a Spin Wheelchair Basketball Tournament put on by the MUSC Doctor of Physical Therapy Class of 2016 was held on June 27. The event included a wheelchair basketball tournament with 16 teams participating in a exhibition game between professional teams (North Charleston Hurricanes and Port City Spokesmen), along with a silent auction and resource fair. The event raised over $8,000 for Achieving Wheelchair Equality, a local organization that seeks to help wheelchair users and others with mobility challenges overcome worklife obstacles.

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