Category Archives: Current Issues

The Importance of Apologies

Marie Prothero received the college’s 2016 Alumni Achievement Award in recognition for her contribution to the nursing profession. This article contains excerpts from her BYU Homecoming address, delivered October 13, 2016.

“I believe that for us to move healthcare forward into achieving quality healthcare and outcomes, [we must] have transparency,” says Marie Mellor Prothero (MS ’96), MSN, RN, FACHE. A nurse administrator, Prothero is the executive director of quality for St. Mark’s Hospital in Salt Lake City. She oversees quality assurance for her organization that includes electronic reporting, patient concerns, and physician compliance. She also strives to improve process flow and safety efforts.

Prothero is currently working on a PhD in nursing from the University of Utah; her dissertation is focused on transparency in healthcare and the role of an apology following a medical error.

The attributes of an apology include expressing regret and sorrow, admitting fault with a statement that an error occurred, listening with dignity and respect, correcting the mistake and ensuring it will not happen again, and offering restitution to the victim.

Her studies highlight several antecedents, such as why we apologize and the corollaries of not apologizing when there is a medical mistake or accident.

“We must realize [that the] consequences of not apologizing affects our emotional, spiritual, and physical well-being,” says Prothero. “And if left unresolved, [mistakes] can create feelings of bitterness and even increase litigation and settlement costs.”

To give an effective apology, one must express regret and sorrow; you cannot fully apologize without remorse. “A conversation casually informing a patient of the error is inadequate,” says Prothero, “and so is a statement that seems forced and insults others’ intelligence.” Appropriately apologizing takes the right setting and practice.

Prothero’s research serves as a starting point for additional inquiry to explore the nature and types of apologies. It will help other nurse leaders identify what comes after the apology and if the patient-provider relationship can be repaired.

“There must be ongoing communication as additional details are learned—with the patient and family members, as well as with unit staff and hospital administrators,” she says. “Once we identify system changes, we need to involve others in the process to ensure needs are met and proper training occurs.”

Further, Prothero’s studies clarify the role of nursing in disclosure, apology, and the creation of a culture of safety in which everyone feels valued and able to speak up. “We must continue the important work of quality assurance, process improvement, and system improvement,” she says. “Never forget that every patient matters.”

She also emphasizes that nurses have the opportunity to be leaders with a broad impact in their organization.

“Leadership is interdisciplinary and [is] a team approach,” she says. “You must know your strengths and weaknesses and understand what you bring to the team. Then surround yourself with people who are different from you and learn from each other for success.”

Prothero has been a leader her whole career. Before St. Mark’s, she was the CEO of Utah Valley Specialty Hospital in Provo for seven years, a CEO of Ernest Health for four years, and an operations officer with Intermountain Healthcare for 22 years.

“Never stop learning and developing your nursing and leadership skills,” she concludes. “Success comes from ensuring the success of your peers. Take time to remove roadblocks, recognize achievement, and encourage others. By being a positive influence, you can see the best in your team.”

 

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A Trip They’ll Never Forget: Nursing Students Visit The Holy Land

With clinicals, Public and Global Health trips, and immense loads of homework, BYU College of Nursing students keep themselves busy. The idea of doing a non-nursing study abroad trip may seem out of the question for some, but eight nursing students lived the dream when they studied at the BYU Jerusalem Center this past summer.

Ironically, the students did not coordinate between themselves to go. It was mostly spontaneous decision-making by each student.

“It was just one day in class I was like, ‘You know, I think I really want to go to Jerusalem,’” Hailey Coburn, a fourth-semester student, says.

“None of us planned to go together, but we always found each other,” fourth-semester Jessica Butterfield says. Some, such as third-semester student Maggie Gunn, had friends or family who had attended before and highly recommended the experience.

Upon arrival to Jerusalem, the students realized that they were not in Provo anymore.

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Maggie Gunn in front of the Dome of the Rock

“It was unlike any country I’ve ever been to in my life, and that’s saying a lot because I’ve been to a lot of countries,” says globetrotting fourth-semester student Ashley Dyer, who has visited 23 countries.

“One of my favorite parts was walking through the Old City—you could smell all the spices and they always had their olives or their pickles,” Shannon Beech, fourth-semester, says.

The immense diversity of Jerusalem was a defining feature of the trip for most of the students, who appreciated being able to learn from the different people and cultures of the city.

“It was an absolutely incredible experience to be there and understand the culture a little bit better,” Gunn says.

“One thing that I learned from going there is that even more important than the sites is the people,” Coburn says. “There are some of the nicest people over there.” Students routinely were welcomed by locals and invited to participate in communal dancing and other activities. Each culture brought something new that the students were able to learn about and respect—for example, the students visited churches, a mosque, and a synagogue.

“It was really cool learning about the different cultures because I haven’t really been very familiar with Jewish or Muslim culture before, and I think that’s really going to help me in the future,” Dyer says.

The devotion of the adherents of the various religions in Jerusalem also struck a chord with the nursing students.

“When you think of the Middle East, everyone thinks about tension and violence,” Dyer says. “I mean, there was some violence going on, but it was definitely a lot more peaceful than I expected, and a lot more spiritual, both from my religion and other people’s religions as well. People are so dedicated to their faith and it really inspired me.”

“They all lived for a purpose,” Beech says. “That’s something that really hit home with me.”

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BYU Jerusalem students in traditional clothing

Life in the Jerusalem Center was a mix of hectic and spiritual.

“Something about the Jerusalem center is that everything changes—nothing is consistent,” Butterfield explains. “Usually five days a week we have class and our class schedule is not consistent.”

Students took classes on the Old and New Testaments, Palestinian history, local languages, and the different religions of the region. In between classes, students could relax in the lounge, visit local sights, or get food at the Center cafeteria. Butterfield noted that one of the best parts about the trip was not having to cook a meal for three-and-a-half months.

“Usually Mondays were our field trip days,” second semester student Katie Glaus says. Field trips could be within Jerusalem or farther abroad. During the semester, students visited Galilee, Jordan, and Greece on extended trips.

Adventures abounded during the students’ stay. They floated in the Dead Sea, canoed down the Jordan River, rode camels, visited the ruins of Petra in Jordan, climbed rickety towers in Greece, and explored old tunnels in Jerusalem.

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Jessica Butterfield in front of Petra in Jordan

One of the most important parts of the trip, however, was the bonding that occurred between the students. Several of them were assigned as visiting teachers to each other, and they all came closer as they struggled through the immense workload of the Center. Of course, the conversations would come frequently come back to nursing.

“Since I’m in a lower semester, I would always ask questions about the next semester,” Glaus says. “I would just always go to them for advice with nursing stuff.”

“I feel like there’s a special connection between us now,” Coburn says.

The students were impacted spiritually as well. Each had special experiences that contributed to both their spiritual growth and their nursing abilities.

“One thing that was very special about to the Holy Land was that we were able to go see the sights where Christ healed people,” says Dyer. Visiting these sights taught the students about charity and truly caring for patients the way Jesus Christ did.

“I think being there and also studying the life of the Savior while I was there and what He did for the people just helped me to be more loving and helped me to see the bigger picture,” Glaus says.

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Butterfield in Greece

Back in Provo, the students have to adjust to not hearing the Islamic call to prayer five times a day and not having cheap falafel (common street food in Jerusalem) within walking distance of their classes. However, the impact of the trip continues to be felt, and the students are confident that their nursing careers have been positively influenced by the trip.

“I feel like one of the cool things about this experience is that it’s still affecting me as I come back to normal life,” Butterfield says.

 

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Posing in traditional clothing

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Kosher McDonald’s

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Climbing to Petra

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Dyer in front of the tomb of Lazarus

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Glaus and Dyer in front of Petra

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Floating in the Dead Sea

Photos courtesy of Maggie Gunn, Jessica Butterfield, and Ashley Dyer

Happy Fall (Prevention Awareness Day)!

In 2007, a window washer astonished the world when miraculously he survived a 47-story fall. This past February, thousands of Youtubers viewed the footage of a Utah man surviving a 90-foot fall in the Grand Canyon.

While sensational falls like these attract a lot of media attention, they are just the tip of the iceberg.

In fact, the CDC estimates that every second of every day, an older American falls, making falls “the number one cause of injuries and deaths from injury among older Americans.”

That’s why today, the first day of fall, is Fall Prevention Awareness Day, sponsored by the American Council on Aging. The idea is to spread awareness of the dangers posed to seniors by falling and highlight preventative measures.

The CDC explains, “Each year, millions of older people—those 65 and older—fall. In fact, more than one out of four older people falls each year, but less than half tell their doctor. Falling once doubles your chances of falling again.” The CDC also estimates that the problem will increase as more and more Americans turn 65.

“[Falls] are very common in the older population,” says assistant teaching professor Dr. Blaine Winters, an expert on head injuries and gerontology. He believes that most falls go unreported despite the massive dangers they pose. Part of this, he thinks, comes from a lack of understanding about the nature of fall injuries or the health risks that can lead to them.

“Many times we hear ‘Oh, she fell and broke her hip,’ but in reality her hip broke because of osteoporosis which made her fall,” he says. He also points out that many times the consequences of a fall worsen over time, meaning that many Americans do not initially seek treatment and thus increase the chance of more serious health problems like a stroke.

That is why, Winters says, anyone, particularly older adults, who has fallen should promptly visit the emergency room. However, even more important are the preventative measures that even college students can start in order to reduce their future risk of falling.

“Fall prevention begins before you’re at risk for falls,” he says. Health living, including exercise, is critical to maintaining strong and flexible muscles into old age. Having proper lighting and removing tripping hazards in homes are also important.

BYU Earns Bronze Level Campus Recognition from American College of Sports Medicine

Last October as the Pokémon Go craze swept the nation, dozens of BYU students were treated to an unusual sight—a Pikachu tromping around campus. In between taking selfies with students, the mascot vainly tried to use its stubby arms to stabilize a foam board sign hanging from its neck that advertised an upcoming Pokéthon 3K run/walk for the BYU community.

That weekend, 140 people attended the event, chasing Pokémon as they completed the course. Few knew that their participation was a fulfillment of the hopes of a small cadre of BYU professors trying to improve BYU fitness levels, and that it would contribute to BYU being recognized as a Bronze Level Campus by the American College of Sports Medicine (ACSM), a distinction awarded on June 1, 2017.

Nursing professors Dr. Neil Peterson and Craig Nuttall and exercise science professor Dr. James LeCheminant are working together to implement the college campus version of an ACSM program called Exercise is Medicine. The initiative focuses on improving the fitness levels of community members through holding events, education, and evaluating people’s fitness using a measure known as the Physical Activity Vital Sign, which measures how much people exercise per week.

“Exercise is something that frankly is probably one of the most important things in medicine right now, because it can treat most diseases that are out there,” Nuttall says. “You exercise, your diabetes risk goes down. You exercise, your hypertension risk goes down. You exercise, your cancer risk goes down.”

“The scientific evidence of the benefits of physical activity to support and improve health is overwhelming,” LeCheminant says. “Health initiatives in large venues, such as a university setting, have the potential to positively impact many people. Promoting ACSM’s theme of ‘Exercise is Medicine’ puts focus on health which can lead to a higher quality and more productive life.”

The Pokéthon was the pinnacle of the team’s efforts; it also helped qualify BYU to earn the Bronze Level Campus ranking. Other work has included teaching BYU nursing students about the Physical Activity Vital Sign and evaluating work that the university has already done to increase physical activity, such as closing down parts of Campus Drive and improving sidewalk availability.

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Peterson representing BYU at the Exercise is Medicine award ceremony

The organizers of Exercise is Medicine told Peterson, who is the project leader, that they were surprised to see the large role of the BYU College of Nursing in this endeavor, given that most universities were wholly reliant on their exercise science departments to implement the program.

“They were really happy that our leadership team is interdisciplinary,” Peterson says. “Another thing that was impressive that they mentioned to me was that at our Pokéthon fun walk two thirds of our participants were community members, so we weren’t just getting people on campus. It wasn’t just faculty, staff, and students; we had a very sizeable community involvement because we do want to make our campus healthier, but they see the campus as an epicenter for the community.”

The Bronze Level recognition will last two years, but the team plans to find ways to earn possibly a Silver Campus ranking in the next year.

“The university should be very proud of the efforts that they’ve done already to make the campus safer for pedestrians, making it a more walkable campus, and really using the built environment to promote physical activity,” Peterson says. “These different levels of the awards help to give us direction to make sure that we are meeting what some national recommendations are as far as improving physical activity and reducing sedentary behavior on campus and in the surrounding community.”

Immunization Exemptions and Pediatric Care

As a family nurse practitioner working in a pediatric outpatient clinic, assistant teaching professor Lacey Eden (BS ’02, MS ’09) educates parents about the general health of their child. Eden frequently addresses parents’ questions and concerns regarding immunizations for their child due to the requirement that parents provide either proof of completion or a certificate of exemption before their child can be enrolled in school.

Because of her experiences talking with parents about immunizations, Eden decided to research the rising immunization exemption rates in Utah. She is currently working on a standardized education module for immunization exemptions and also a mobile app called Best for Baby.

Education Model for Immunization Exemption Rates

Immunization exemption rates, particularly those granted for philosophical reasons, have risen drastically in Utah over the last few years. The rise in exemptions may have played a role in several recent outbreaks of vaccine-preventable diseases (measles and pertussis) in Utah, which prompted Eden to research the education provided for parents who wish to obtain an exemption. Currently she is investigating the specific education requirements for philosophical immunization exemptions in all states across the country and how effective this education is at combating the rise in exemption rates.

In her research, Eden found that all 50 states allow medical exemptions for immunizations, 48 states allow religious exemptions, and 18 states allow philosophical exemptions. Utah is one of the 18 states that allows all three types of exemptions. While 18 states allow philosophical exemptions, only 14 states require education before granting exemptions. The type of education parents receive varies from state to state and from county to county throughout Utah.

Eden has discussed her study with several prominent leaders of various associations and departments, including the health director and the immunization manager at the Utah State Health Department and the chair of the Utah Department of Human Services, in efforts to implement a standardized education module for Utahns to complete in order to gain a philosophical immunization exemption. She has also been invited to participate on an immunization exemption task force with several key participants in the state and with fellow College of Nursing faculty—Dr. Beth Luthy (MS ’05), Gaye Ray (AS ’81), Dr. Janelle Macintosh, and Dr. Renea Beckstrand (AS ’81, BS ’83, MS ’87). This task force is charged with creating a standardized education module that can teach parents the signs and symptoms of diseases, what to do if their child contracts a disease, and what to do in the case of an outbreak. The module will also answer frequently asked questions about immunizations and provide information about obtaining low-cost immunizations.

The Association of Immunization Managers and the Centers for Disease Control and Prevention have contributed to this project by aiding in the data-collection process and reviewing the research questions on educational requirements in reducing immunization exemptions.

Best for Baby App

In 2013, the Advisory Committee on Immunization Practices (ACIP) published its recommendation that pregnant women should get a Tdap vaccination between 27 and 36 weeks of pregnancy. Infants do not receive this vaccine until two months of age, but in the womb they do inherit temporary protective antibodies from their mothers, so it is essential for mothers to receive the vaccine and pass antibodies to their children in utero.

Despite being recommended by the ACIP, very few women receive the Tdap vaccine during their third trimester, so Eden, who serves as chair of the Utah County Immunization Coalition, decided to educate soon-to-be parents through a free mobile-device app called Best for Baby (now available on iTunes).

Though geared toward increasing Tdap immunization rates, the app does much more than just teach about vaccines. The program sends expectant parents weekly push notifications that provide updates on their baby’s development and when they need to see their OB/GYN. Additionally, updates tell parents what tests to expect at their next appointment, what those tests look for, and why they are performed. The app continues to give parents monthly push notifications for two years after the birth of the child. These updates include when the child should see a care provider, what developmental milestones he or she should reach during the month, and what immunizations that child should receive.

Enhancement in Education, Part One: The Manikins Among Us

This story is part of an ongoing series about the BYU College of Nursing’s Mary Jane Rawlinson Geertsen Nursing Learning Center and the College’s constant efforts to update it.

Eight new patients in the Mary Jane Rawlinson Geertsen Nursing Learning Center (NLC) just got the doctor’s orders: eight years of bed rest and weekly IVs. It may seem like an intense recommendation, but given that the patients are newly acquired manikins designed to help increase nursing proficiency, the tall order makes sense.

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The BYU College of Nursing recently obtained eight mid-fidelity nursing manikins, four of which are the Nursing Anne type, pictured above.

The manikins, four “males” named Kelly and four “females” named Anne, are created specifically for nursing programs. They replace eight older models, which were donated to BYU-Idaho, and come with many features that allow students to train in a variety of situations.

“You can set them to run scenarios,” says Kristen Whipple, NLC assistant supervisor. “It changes every day to a different lab. It’s something on Monday, and then it’s a different lab on Tuesday.”

The Anne and Kelly manikins are considered low to mid-fidelity, which means that they can represent a human to a reasonable extent. When purchased with digital equipment, including a device known as a SimPad, they create a more lifelike patient.

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NLC supervisor Colleen Tingey and student employee Brian Wing work to unload the new manikins, which have weights comparable to normal people.

“They serve a great purpose just as they are. If you add the SimPad to them, then you can hear heart sounds, lung sounds, belly sounds, GI tract sounds,” Whipple says. “The manikins give us a great opportunity to let you hear what the not-normal sounds like.”

BYU nursing students work with manikins, including four high-fidelity ones, throughout their time in the nursing school. During their first three semesters, students use Anne and Kelly to run through the basics of inserting an IV, dressing wounds, and communicating with a patient. Often students will pair up, with one treating the manikin and the other vocalizing potential responses from the patient.

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Appendages to the nursing manikins wait to be unwrapped.

Each one represents a significant investment in student education; according to Colleen Tingey, NLC supervisor, one Anne or Kelly and the accompanying equipment costs around $11,000 and lasts eight years. The high-fidelity manikins cost around $65,000 each and last only five.  Accordingly, the college makes use of high- and low-fidelity in order to maximize the investment for the students.

“It’s having the different ones that make the real success of the program,” Whipple says. “You really need both to do it well. The big ones seem like they’re better, but they’re good for certain things and [the mid-fidelity manikins] are better for some things.”

Whipple and Tingey, both nurses themselves, appreciate just how much manikins have changed how students are taught.

“I like the fact that it integrates more than just learning the skill. You’re practicing the communication and you’re bringing things together,” Whipple says. “I did go to nursing school, and I think, ‘Wow, I wish that I’d learned it this way.’”

Convergence: How One Disease Brought Four Lives Together

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Representatives from the awareness group Meningitis Angels accompanied by four BYU faculty members, with Beth Luthy and Lacey Eden on the far left, and Janelle Mcintosh and Renea Beckstrand on the far right.

Meningitis. It ebbs and flows in terms of public visibility, and for some people the disease is either unknown or not a concern. For others, however, it is constantly on their minds as they work to combat the risk of another outbreak.

Friday, September 16 will see the awareness group Meningitis Angels at BYU presenting information about the disease. Those in attendance will include Johnny Dantona and Leslie Meigs, two meningitis survivors, as well as Frankie Milley, the group’s founder and national executive director. Also present will be Lacey Eden, an assistant teaching professor whose passion is promoting vaccinations.

Here are their stories.

 

“I see those kids that are so helpless.”good-8

“I don’t know anything about it.”

That’s the phrase that assistant teaching professor Lacey Eden believes a lot of college students think when asked about meningitis, the infectious disease capable of wreaking havoc on a college campus.

“There’s not many people that know a whole lot about Meningitis B,” Eden says. That, she explains, becomes especially problematic on college campuses, where various factors including proximity of students, poor diets, little sleep, and lack of immunization requirements increase the possibility of an outbreak.

Besides teaching at the Nursing College, Eden also educates the general public about preventing infectious diseases through vaccinations. In fact, her involvement in that cause is what brought the Meningitis Angels, who work in the same cause, to her in the first place.

“It all started with House Bill 221 last year, which was a bill to require education before parents could get their immunization exemptions,” Eden says. The bill, which did not pass, would have required that parents learn more about immunizations before they could refuse vaccinations for their children. Eden and fellow teacher Beth Luthy worked tirelessly to promote it, meeting with the bill’s sponsor, Utah Representative Carol Moss, to help her write it and also giving interviews to the media.

This all made her a viable partner for the Angels’ upcoming Utah awareness campaign. As a vaccination advocate, she has accomplished much, including creating an app that helps mothers know when to immunize their babies and also heading a special interest group on immunizations for the National Association of Pediatric Nurse Practitioners. As a teacher, she knows how to work with students and faculty.

In April, the Angels asked for Eden’s help. She agreed; her first assignment was to meet with student body presidents from various Utah colleges to discuss meningitis and how to prevent it. The student body presidents, in turn, would return to their colleges and spread the information.

“So the whole idea behind the Meningitis B Awareness campaign is to educate college students about Meningitis B,” Eden says. “They took it back to the student body officers and talked about how they could do their awareness campaign on campus.”

Getting the correct information out there for students is a key focus for Eden.

“Even if we can educate a very small percentage of those people, hopefully those people will then educate their friends, and then their friends will educate their friends, and hopefully we can see people being more aware of this,” she says.

Another eventual goal of hers is helping develop college vaccination requirements, including at BYU. Utah is one of few states that does not have university vaccination laws.

“I think we should, especially because when you consider the severity of meningitis and how quickly it can be debilitating and even cause death, the fact that there is an immunization to prevent that. Even though it’s a small chance that you could get it, the repercussions are totally worth the requirement to get vaccinated,” Eden says.

One of her biggest motivations is her belief that immunizations are a social responsibility. If one person doesn’t get vaccinated, she explains, they could be putting individuals in their community at risk, especially those with weaker immunization systems.

“I think for me it’s those individuals who are immunocompromised and unable to get immunized, so they depend on everyone else to be immunized to protect them,” Eden says. “As my experience in the pediatric office, I see those kids that are so helpless, and those who can get severely ill from things like that, and to me it’s all about that. Protecting the weakest in our community is really a reflection of how we are as a whole.”

She also understands the wide array of opinions that are spread online, many of which are not backed by substantial medical evidence. Her hope is that this event will help students understand the facts behind the disease, and also that in the future students will rely on dependable sources for information about it.

“I feel like college students are very savvy with social media, and they can very easily get messages on social media about immunizations that are false,” Eden says. “I would just encourage them that while they’re doing their research that they look for credible, reliable research and sources that have a scientific basis and proof about vaccines and their safety.”

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“If you give up, you’re not going to get anywhere.”good-6

Johnny Dantona, 21, of North Carolina is definitely the athletic type. He enjoys baseball and basketball, and every Monday tries to make it to the bowling lane with family or friends.

“It’s a little difficult the way I have to stand and everything, but I do what I like to do,” Dantona says. It’s a little difficult for him because when he was three, he contracted meningitis and lost both legs.

Meningitis is a disease that inflames the area around the back and brain. It comes in many forms, including bacterial meningitis, which can kill a person in less than a day. Other times it leaves its victims with intensive medical issues. Dantona was no exception.

“I don’t remember much because I was so young, but I know that I was fine one minute during the day and then by midnight I was on life support in the hospital. I was in there for six months,” he says. “I ended up losing my fingers, both my legs, and the disease actually hit my whole left side of my body so my left side is weaker than my right.” That includes the left side of his brain, which slowed down his learning ability.

The years following the infection have had their challenges. Learning problems, medical costs, and the effort to obtain special prosthetics that insurance won’t cover have all been obstacles, but Dantona is not a quitter.

“If you give up, you’re not going to get anywhere. For me, this pushes me to do what I want to do, what I think is right,” he says. He walks the talk; Dantona was an ROTC member in high school and for training ran a mile on the track without his prosthetics. Despite the pain, he still goes out to try and walk as much as he can.

His family was eventually contacted by Frankie Milley and he soon joined the Meningitis Angels. Dantona is a national teen leader within the organization. His passion is helping raise awareness of the vaccination for college students.

“If it helps them, it makes me feel better knowing that they’re not going to go through the same stuff that I went through, or worse,” he says. “That’s what keeps me going.”

Despite the trials he has faced, he appreciates that his experience can have a positive impact on his fellowmen.

“With the college students though, even if they don’t understand what [meningitis] is, they see the side effects of what the disease does, so then most of them will go out and probably look it up and people will learn more about it if they want to,” he says. “I think them seeing us and how we look and how we get around is what helps them out a lot more, too.

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“What’s frustrating is that it’s all preventable.”good-5

Leslie Meigs, 26, doesn’t strike people as someone who came within inches of death from meningitis. However, her story reveals a long and painful journey spanning nearly 20 years.

When she was eight, the Texas native one day began feeling ill. Everyone assumed that it was the flu.

“Long story short, that night I was life-flighted to Texas Children’s Hospital and put on a ventilator,” she says. “They put me into a drug-induced coma for two months. There was a point where my brain function was almost completely gone, and the hospital had voted to go ahead and stop life support.”

Right when the doctors were about to tell her family the hospital’s decision, her right hand stirred. That saved her life and started her path to recovery. Slowly, she says, her brain function returned. However, the disease left her with a long list of health complications.

“I had to learn how to walk again. I have scarring all over my body,” Meigs says. “I had to go on continual dialysis because my kidneys were covered in scars, and so a lot of my scarring is internal. I have a lot of organ damage, a lot of blood issues.” In fact, years after she contracted the disease she had to receive a new kidney, donated by her father, and now has to take many medications to ensure that everything functions.

Meigs says that life for a survivor is difficult, both physically and mentally.

“So one of the big points I like to make when talking to fellow students or talking to the public in general is that with this disease, you don’t just get it and its gone,” she says. “If you’re lucky enough to survive the disease, you are reminded of it every single day, and you suffer every single day because of it.  It’s something that you have to learn to live with.”

“What’s frustrating is that it’s all preventable,” she says.

Meigs was one of the first victims with whom Milley worked. Milley had her help promote a bill designed to educate Texan citizens about the dangers of meningitis. Now, years later, Meigs works as a national teen leader for the group.

“Being able to communicate with people just how horrifying this disease is and how important it is to protect yourself and in doing so you protect others, it gives a purpose to our experiences to know that we can actually help people from experiencing this same sort of suffering and financial costs,” she says. “[Meningitis is] a long word of a long disease slapped onto the news with every other issue that’s going on, so to be able to put a picture, a face to it is what really makes the difference.”

Meigs is a strong advocate for everyone to receive the vaccination, not just to protect themselves but also others.

“The example I like to give for it being a public health issue is that it’s in the same line as traffic laws. You don’t stop a stop sign just to protect yourself,” she says. “You stop at a stop sign for other people. You don’t vaccinate just to protect yourself. You vaccinate to protect your entire community.”

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“Ryan didn’t have to die.”good-7

Frankie Milley is an exuberant Texas native who loves a good laugh. However, when it comes to talking about her work at Meningitis Angels, behind the smile is pain. Her story is one of loss and coping, as well as dedication to preventing further tragedies.

It all started Father’s Day, 1998. Her only child, Ryan, began to have a fever along with an earache.

“He was eighteen, just reached his pro golf status, just graduated high school, and was getting ready to go to college,” she says. Events quickly took a turn for the worst, in the process changing Milley’s life forever.

“Fourteen hours later he was laying on an emergency room table with blood coming from every orifice of his body, and he died,” she says.

Milley could not believe what had happened. In retrospect, she can now see that her situation paralleled that of many who have lost family to meningitis; there was limited information available at the time about the disease and the vaccine to prevent it. Milley became determined to change that.

“First I grieved, then I got angry, and then I got busy,” she says.

Since that day, she has helped write, by her count, almost 42 laws addressing vaccinations and meningitis.

In 2001 she founded the Meningitis Angels as a group dedicated to spreading facts to families. According to her, it was instrumental in convincing the CDC to put up recommendations about meningitis vaccinations. The group also works to educate policymakers about the issues involving the disease so that they make informed decisions.

Beyond those fields, the group serves as a hub for families who have been affected by the disease.

“Meningitis Angels also does a lot of hands-on work with the kids who are victims. We offer scholarships for college and technical training. We provide special equipment for the kids sometimes when the insurance doesn’t cover it,” she says.

The kids affectionately refer to Milley as “momma bear.”

“We’re a national support group. We’re like a big family,” she says. “We have a good time. We’ve laughed, we’ve cried together.”

That support becomes critical for families facing down meningitis. Milley lists several possible results of each case that extend beyond just the physical, including financial ruin, insurance problems, and fracturing of families.

She gives as an example one child within the organization who lost his arms and legs, thus requiring an attendant all day, every day.

To her, the choice becomes clear.

“If you weigh all the costs of all of that—some of it you can’t even put a price on, it’s life—if you put the price on the economics and the cost of the aftercare of meningitis, not to mention the millions that the first initial arrival to the hospital can take, what’s a vaccine?” she says.

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