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Hendon’s Story

Hendon

Hendon is a soft-spoken, polite 17-year old with a quick smile and warm demeanor. A junior at his Plant City, Florida high school, Hendon is a standout in a variety of school activities from wrestling to band, as well as math and science.

Hendon was born with microtia, a congenital deformity where the external ear is underdeveloped. His mother Stephanie recalls worrying about how they would afford the cost of the multiple surgeries necessary to correct the defect. (Often private insurance will not cover what it considers a cosmetic anomaly; microtia correction can cost $20,000 to $30,000.) At a little league game when Hendon was nine, Stephanie voiced her concern to a friend, a fellow nurse with whom she had attended school. Her friend suggested she reach out to Shriners Hospitals for Children.

“Ironically, we had both worked at the Tampa Shriners Hospital, but because that location focuses on orthopedics, I didn’t think of it for Hendon,” Stephanie said. When she discovered that the Cincinnati Shriners Hospital specializes in pediatric plastic and reconstructive surgery, she reached out for an appointment.

Shriners Hospitals for Children—Cincinnati recognizes that serious self-esteem issues can develop when children are bullied or teased for physical differences. Its team of board-certified plastic surgeons can treat a wide array of issues, whether congenital, developmental or acquired, regardless of a family’s ability to pay.

Hendon remembers his first meeting with his surgeon, Brian Pan, M.D., FACS. “As a kid, he explained everything to me so I could understand; he even drew pictures so I knew what was going to happen,” he said.

Ear reconstruction must occur in stages, requiring a series of surgeries to create the ear from rib, skin and cartilage grafts. Hendon has had three surgeries and may need one more.

Stephanie continues to marvel at how, even at age 17, Hendon actually looks forward to his trips to Cincinnati Shriners Hospital. “Everyone here makes him feel special and cared for. It is just the best place.”

Kaj Kaj

Kaj’s Story

Kaj was a healthy 7-month-old boy living with his parents in Evansville, Indiana, until one day in March of 2012 when their world changed forever.

That is when Kaj, strapped in his car seat, was severely burned in an accidental vehicle fire. His father was able to pull him from the fire and rushed Kaj to the nearest emergency room with life-threatening burn injuries.

Because 30% of Kaj’s burns were third degree, the doctors there said he would need to be transferred a burn specialty facility. Even with immediate treatment, they estimated he had 72 hours to live.

Within two hours of the fire, Kaj was on an emergency Life Flight destined for Shriners Hospitals for Children—Cincinnati, where a team led by Kevin Yakuboff, M.D., FACS, FAAPS, stabilized and treated Kaj. Because of the skillful care he received at the Cincinnati Shriners Hospital, Kaj survived the first 72 hours and well beyond. Over the next seven years Shriners Hospital for Children – Cincinnati became a second home for Kaj and his parents. He has had 40 surgeries to treat his injuries, including skin grafts to scar releases.

Nothing could have prepared Kaj and his family for how their lives would change after that day. Finding a “new normal” following the accident took time, but with guidance from his medical team at Cincinnati Shriners Hospital and social worker Donna McCartney, Kaj’s parents have been able to nurture both his physical recovery and his resilience through a childhood different from his peers.

Kaj

Kaj, now 7 years old, is growing up with a kind heart, magnetic personality and strong spirit. Thanks to the family-centered care at the Cincinnati Shriners Hospital, Kaj parents are confident about his future, and proud to see him grow, thrive and feel comfortable in his own beautiful skin.

Tommy Tommy

Tommy’s Story

TommyTommy’s family makes its living on the water; in his hometown of Miami, Florida that is not unusual. His relatives worked together on their commercial boat, and when Tommy was old enough he often pitched in to help. One afternoon when he was eight years old, Tommy, his father and uncle were coming home from a day at sea. As they exited the boat, something caused its 300-gallon gas tank to explode. The accident severely injured both men as well as Tommy, who was burned on nearly 40 percent of his body.

Initially all three were treated at a local hospital, but it became clear that Tommy, whose injuries were the most acute, would need specialized, pediatric burn care. He was transferred to Shriners Hospitals for Children—Cincinnati, where he could benefit from its decades of research and expertise in burn treatment.

For the next 13 years, Cincinnati Shriners Hospital became Tommy’s second home. Over the years, he and his parents traveled to Cincinnati from Florida for many additional surgeries, to release scars or receive laser treatments.  He learned the names of nearly all his nurses and doctors, and they came to know him for his upbeat, can-do spirit.  His family was also able to take advantage of follow-up appointments at semi-annual burn injury clinics held by Cincinnati Shriners Hospital staff at the Shriners’ Tampa hospital, which only treats orthopedic conditions.  (Many pediatric burn patients from Florida are treated at the Cincinnati hospital, so these clinics were arranged to ease travel burdens.)

Social worker Lori Boerger had just started at Cincinnati Shriners Hospital when she first became Tommy’s Family Care Manager.  “Tommy is a survivor in the broadest sense of the word,” she said.  “I remember the first time we met: I was walking past his room, and noticed him with a small board game spread out on his bed.  He saw me pass, jumped up and ran to the door, saying, ‘Hey- you want to play?’  He would even initiate conversations with other children who might feel anxious because of his scars. I knew this young man was going to be OK.”

Recently, Tommy returned to the hospital for one final release surgery before turning 21.  While there, he made sure to see the people who had become like family to him, including his doctor, Cincinnati Shriners Hospital Chief of Staff Petra Warner, M.D.  “She was almost like a second mother to me,” Tommy shared. “This trip was my first without my parents, and I was a little nervous. But Dr. Warner explained the procedure to me like I am an adult and I could tell by her face, she felt it was the right treatment for me.”

Tommy’s courageous spirit continues to be an inspiration.  He plans to join the Coast Guard where he can serve his country and nurture his love of life on the water.

Regan Regan

Reagan’s Story

ReganSix-year-old Reagan and her family are from a suburb of Cincinnati, so it was an adventure for parents Erin and Ryan to pile her, her three siblings and several cousins into the family car for an end-of-summer camping trip near Columbus, Ohio.

That evening, after a dinner of hot dogs and s’mores cooked over a campfire, the happy crew played nearby before heading to their tents for the night. Ryan is a firefighter, so Reagan and the other children were well versed in fire safety rules. However, twilight made it difficult to see the metal fire ring that encircled the smoldering hot coals. Reagan stumbled and fell into the ring and on the embers, receiving second and third-degree burns to the back of both legs.

Ryan grabbed her immediately and went straight to the nearest local hospital. “It all happened in a flash,” he recalled of the event. Once treated, the nurse asked where they would like to take Reagan for continuing treatment.  Erin immediately requested Shriners Hospitals for Children—Cincinnati; she had a friend whose daughter had been recently treated for a coffee scald and knew it was the best destination for pediatric burns. They had an appointment two days later.

“With four children, we have had bumps, bruises and even stitches, but we never experienced anything like we did with Reagan’s accident,” Erin said.  “I never knew how horrible burns were; how even the simple act of cleaning the wound causes excruciating pain.  We are so grateful for what Shriners did for us.”

Fortunately, Reagan’s injuries were relatively mild and the family only had to make a few visits over a two-week period.  Nevertheless, the kindness and superior care they experienced at Cincinnati Shriners Hospital stayed with them months after Reagan’s wounds had healed.

So when the holidays rolled around, Erin, who is a teacher at their area middle school, asked her students to gather donations for the hospital rather than gifts for her.  They did not disappoint.  Shortly after the holidays, Ryan delivered a large cart filled with games, books and craft items for other patients to enjoy.  “It isn’t nearly enough to say thank you for all the wonderful work Shriners Hospitals do,” Erin said, “not only for our daughter Reagan, but for so many families across the country.”

Josie Josie

Josie’s Story

JosieJosie is an active 7th grader who enjoys soccer, basketball and competitive swimming. She is also bright and inquisitive, so when cabin fever set in on the week’s second sub-zero “snow day,” Josie decided to see for herself whether hot water tossed in the air would freeze, as she and her friends had seen on social media.

Her first attempt, using hot water from a single-cup coffee maker, was unsuccessful. Undeterred, she boiled water in a saucepan and took it to the back yard.  She tried to swing the heavy pan out and in front of her, but the scalding water went straight up, coming down on her head and face.

Her mother Nikki correctly placed cool compresses on the burn area, but when pain persisted, she took Josie to the local pediatric hospital. There they recommended that Shriners Hospitals for Children—Cincinnati would be the best place for treatment.

Fortunately, Josie had only sustained 1st degree burns, which cause redness, pain and minor blistering, so she was treated and released that afternoon. Even small burns can become more serious if not treated properly.  Cincinnati Shriners Hospital, and its half-century of superior pediatric care, is the right destination for nearly any burn, no matter the severity.

Josie and her mother Nikki were happy to share their story, especially during Burn Awareness Week, to remind others of the dangers of scalding water.

Landon Landon

Landon’s story

LandonLandon was burned by hot water in a kitchen accident, injuring his left hand and arm. Fortunately, he is receiving treatment at Shriners Hospitals for Children—Cincinnati, one of the country’s only freestanding pediatric burn treatment facilities and a premier destination for burn recovery.

Treating a major burn is a complicated process. In addition to the threat of infection, third degree burns must be treated with skin grafts taken from undamaged areas of the patient’s body. As both the injured and the graft sites heal, raised scars can develop. Among the weapons in the arsenal of scar management are compression garments, which can smooth scars’ raised appearance.

Cincinnati Shriners Hospital was the first in the 22-hospital system to add an on-site garment sewing room. These garments are not “one-size-fits-all.” Highly trained garment technicians precisely measure and sew each piece to fit a child’s area of treatment, which could mean socks, gloves, vests or even head gear. They must fit very snugly and apply pressure evenly.

Wearing garments consistently is key to successful treatment. However, because the child must keep them on for 23 hours a day, often for a year or more, compliance can be difficult. To encourage young patients to wear their garments, our hospital technicians speak with each child, and then customize the pieces to reflect their interests and personality. In Landon’s case, he clearly loves Superman, but even without a cape, Landon is a super hero to us!

Once he graduates from compression garments, Landon can be treated with state-of-the-art laser therapy so the appearance of his scars continues to improve.

Picture of Crimson today Picture of Crimson today

Crimson’s Story

Two years ago, Crimson’s family survived a home fire. Although everyone made it out, 13-year-old Crimson was burned on more than 30 percent of her body with second and third degree burns. Crimson was airlifted to the University of Alabama’s Children’s Hospital burn unit.

After five days at the Alabama hospital, the surgeon there recommended that, for the best possible outcome, she be transferred to Shriners Hospitals for Children–Cincinnati. Crimson had five surgeries and endured intense physical therapy, learning to walk again. Today she is learning to live her life as a burn survivor. She is still receiving treatment for scar management that will continue for the next few years.

The night before Crimson and her mother left the hospital from their four-week in-patient stay, her mother left this note for the staff:

To All of Shriner’s Staff,

THANK YOU!! Those two words are not enough for what you have done for my daughter & my family. I was terrified when we first arrived. I was scared to be so far away from home without my support group (family), little did I know you all would become exactly that for Crimson & our entire family. I had no idea what to expect. Not only were the medical staff extremely above & beyond my expectations in the clinical care but also in the emotional care. To have a surgeon, nurse, resident offer ME coffee, let me cry on their shoulder & just sit & talk with me was so wonderful. Having nurses who actually cared what Crimson’s interests were and shared their own interests. When I say nurses, I actually mean every member of her care (PT, OT, child life, family services, photography, nutrition, custodial, security, the list is never ending.) We are blessed & honored to have ya’ll in our corner and a part of our family. This is an amazing place. The love just pours out all around. I just want you to know as we leave we will be carrying a piece of Shriners with us to share with everyone we see.

Love & gratitude until next time,

Jennifer Gilbreath

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Taylor’s Story

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When he arrived at Shriners Hospitals for Children—Cincinnati more than 20 years ago, no one could have predicted that Taylor’s experience there would put him on a path to becoming an accomplished operatic singer—but that is exactly what happened.

Linda and Robert adopted Taylor from a Philippine orphanage at ten months of age.  Two months earlier, a power surge at the orphanage started a fire that caused second and third degree burns on his scalp, arms and legs. They brought him home to Sevierville, Tennessee and visited a Knoxville pediatric hospital for care.  The hospital made Taylor compression garments to reduce scarring.

Linda’s father was a Shriner and “Road Runner”, a volunteer who transports children and their families to the nearest Shriners Hospital.  He had made many trips to the Cincinnati Shriners Hospital and had seen the excellence of its family-centered care for children with burns.  “He kept saying that we should take Taylor to Cincinnati Shriners, but I said ‘we have insurance,’” Linda recalls.

After a few months, though, they were not satisfied with Taylor’s progress and made the trip to Cincinnati.  The difference was dramatic.  “This whole team came into our room and examined him,” she said, remembering that one of their first comments was that the compression garments did not fit properly and were inside out.  “We didn’t know; we thought we were doing everything right.”

Throughout his childhood and adolescence, Taylor made multiple trips to Cincinnati for different treatments– surgical grafts to his leg, or a z-plasty to release contracting scars.  During one visit, his doctor suggested that Taylor pursue something athletic to help stretch the scars that would tighten as he grew—perhaps gymnastics or dancing, he said.

Being from Sevierville—the land of Gatlinburg and Dollywood, Taylor chose dance.   “I started with ballet, tap and jazz,” he says.  He became so adept that his first summer job was performing in the musical theater shows at Dollywood.  He soon realized that although his dancing skills got him on stage, he much preferred singing.  This realization—along with his beautiful voice, led him to Chicago’s Roosevelt University College of Performing Arts where he now majors in Opera Studies.

The spotlight of the stage has not dimmed Taylor’s humility, however.  He remembers his experience at Cincinnati Shriners Hospital, where he says his and so many lives changed for the better.  “Generosity matters; care matters,” he says.  “I remember so many kindnesses [at the hospital], from a friendly face at the front desk to waking from surgery with a Harry Potter blanket.  Those experiences helped shape who I am today.”  His mother Linda is similarly grateful for Cincinnati Shriners Hospital.  “All our needs were met in one place,” she says. “I tell people—we didn’t go there because it’s free, we went because the care was superior.”

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Sydney’s Story

Sydney Birthday image

Before May 23, 2017, Six-year old Sydney was surrounded by caring family and close-knit community.  After that day, she would embark on a difficult journey that would demonstrate the true power of community, far beyond the local neighborhood.

Sydney and her family were enjoying a relaxing day in their home near Kingston, Jamaica, when an accidental flash burn caused severe injury to nearly 20 percent of her body on the torso and back.

Her mother Kerry-Ann immediately took her to the emergency room at University Hospital of the West Indies, a teaching hospital Kerry-Ann emphasizes is lacking in resources, not skill.  As an example, the pediatric plastic surgeons understood the wounds needed to be excised, but the hospital had neither Sydney’s O negative type blood nor the temporary skin to cover the wounds.  So Kerry-Ann’s teenage daughter used social media to organize a blood drive, yielding dozens of pints of blood, enough to help Sydney as well as many other patients in the hospital.  Meanwhile she and her husband were sent into town to purchase temporary skin with their own funds, a “surreal” experience, Kerry-Ann admitted.

More than a week and two surgeries later, Sydney was stable, but not improving.  “Her spirit was gone,” said Kerry-Ann.  Friends encouraged her to bring Sydney to the states for treatment.  After hearing the name “Shriners” mentioned multiple times, Kerry-Ann finally called.  When she reached Amanda, the charge nurse at Shriners Hospital for Children—Cincinnati, she felt something she hadn’t experienced since the incident occurred: hope.  “Amanda was genuine; warm and interested, without knowing us from jack fruit,” Kerry-Ann said.  “She made me feel like it was going to be OK.”

Kerry-Ann and Sydney arrived at Cincinnati Shriners Hospital at 3:00 a.m. on June 17.  “The nurses just swooped In with this elaborate ‘dance’, removing dressings and wrapping wounds, all while distracting and reassuring Sydney.  It was amazing.”

Sydney’s father arrived shortly after.  Beyond the exceptional care and treatment, Kerry-Ann said what impressed them most was the family-centered care they received at Cincinnati Shriners Hospital.  “When Sydney went into surgery one evening, the nurses said, ‘why don’t you two go out and get some dinner? Sydney is here and we’ll take good care of her while you’re gone.  That was such a gift; it gave us time to breathe and regroup.”

Ten days later when Sydney’s grandmother visited Cincinnati, Kerry-Ann said, “She couldn’t believe what she was seeing! This was a completely different child from the one who left Jamaica.  Every day since we arrived [at Cincinnati Shriners Hospital] Sydney was moving from strength to strength.”

Sydney celebrated her seventh birthday while at the hospital.  The staff held a party in her honor, complete with balloons and presents.  Here, 41 days after the incident, she was bright and energetic, a reflection of the care and expert treatment she received from the staff of Cincinnati Shriners Hospital.  When recalling the journey, Kerry-Ann connects their experience to something she always tells her children, “Live good with people,” meaning treat everyone, from the street sweeper to the executive with the same level of respect.  “Life changes in an instant.  Everyone you meet can make a difference.”

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Maverick’s Story

maverick in hospital

The mood was joyful on April 1, 2018 when Erika and her husband Steve gathered with family at his grandmother’s Buffalo, New York home for their son Maverick’s first Easter.  Steve’s grandmother sat in the floor with the eight-month old on her lap and her pet Labrador retriever mix by her side.   Without warning, the usually docile dog gave a brief growl and bit Maverick in the face, tearing a gaping hole across his lip and cheek.

Erika rushed Maverick to the nearest community hospital where she expected him to be stabilized and then dispatched to the local pediatric hospital.  Instead, the emergency room doctor told her, “You need more help than [the local children’s hospital] can give you.  We’re sending you to Cincinnati.” Hospital staff immediately arranged for a mercy flight to bring the two of them to Shriners Hospitals for Children–Cincinnati; Steve would follow by car.  “I didn’t even know which part of Ohio Cincinnati is in,” she said about the whirlwind trip. “I was in shock; my dad gave me his shirt to wear because I was covered in blood.”

Erika and Maverick arrived at the Cincinnati Shriners Hospital late that night, and by 1:00 a.m., Ann R. Schwentker, M.D. arrived to do the first of two surgeries on Maverick.  Initially, Dr. Schwentker stitched the corner of his lip.  “I wasn’t sure Mav would ever be able to drink a bottle again, but by the next evening, he was sucking like nothing happened,” Erika marveled.  The second surgery a day later closed his cheek wound using a flap of skin from his neck area.  “They said we were lucky he had those chubby neck folds; they kept him from needing a graft from a different part of his body,” she said.  “When we got home, my friend who is a nurse marveled at how tiny his stitches were.”

Within six days of the incident, Erika and Steve were ready to return home to Buffalo with their little boy, happy and seemingly unaware of his recent adventure.  Erika said she almost did not want to leave Cincinnati Shriners Hospital. “Everyone there took worries off my shoulders. They thought of everything; sometimes things I didn’t even think of, like a toothbrush and cream for Mav’s diaper rash.” (Children often develop diaper rash after taking antibiotics.)  At one point during the stay, the nurses even took Maverick out of their room so Erika could get a much-needed nap.  “I didn’t even cry for the first four days,” she recalled.  “After I knew he was going to be OK, I let go.”

Once at home, Erika reflected on her experience at the Cincinnati Shriners Hospital.  “Hospitals are never comfortable,” she said. “At Shriners, I felt safe; it felt like home.”

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