It was a bittersweet moment when we were told our twin boys would both be born with a cleft. The day after our sweet boys were born, I posted on Facebook and announced to everyone that the boys were born with cleft lip and one also had a cleft palate. Once I made the post, a friend’s brother, who is a Shriner, saw it and immediately said, “Shriners Hospitals for Children can help.” He met me at the hospital, we filled out the paperwork and the rest – is history! We arrived in Cincinnati just a few months later. The staff was amazing! They made what was a very difficult time so much easier. We can never truly thank Shriners and Shriners Hospitals for Children – Cincinnati for all they have done. Words and even actions will never be able to show the world the change they have made by providing our sweet boys with a better quality of life!
In January 2008, when she was 11 years old, tragedy struck Wushuang – her friends call her Wu – and her family. Their house in Fuyang, a city in the Anhui province of China, caught fire. “I was curled up in a ball, screaming as the fire was surrounding me. I remember being covered by something,” said Wu. “Later, as I was thinking about that day, I realized that it was my mom who covered me with her body. She sacrificed her own life to save mine.” Wu had burns over 80 percent of her body and spent the next several months in a Chinese hospital, undergoing multiple surgeries. Her father was told not to expect his daughter to survive. But he did not give up hope, and in July 2008, Wu was brought to Shriners Hospitals for Children® — Cincinnati for lifesaving treatment.
Traveling to treatment
Wu traveled to America alone, scared and not knowing a single word of English. As she began her eight years of treatment, and endured numerous surgeries at the Cincinnati Shriners Hospital, she learned her first English word: pain. “Those first few months were the worst,” said Wu. Wu stayed with a host family during her time in the U.S. Over the years, she formed relationships with several families, friends and a special group of moms in her Batesville, Ind., community. She managed to attend high school, master the English language and graduate with honors, all while continuing treatment, including surgeries, at the Cincinnati Shriners Hospital. During her treatment, Wu traveled back and forth to China four times. She carried with her not only the emotional sadness of losing her mother, but also the heavy burden of many physical limitations and disabilities due to her burn injuries.
Looking to the future
Wu, currently 19 years old, sees life in a totally different way now. “I’m unique, which corresponds with the meaning of my name – Wushuang – one and only, unparalleled,” she said. Wu’s dream is to have a career in the medical field and help others who are struggling. She says it is her way of honoring the memory of her mother and the many health care professionals who have cared for her over the years. She is well on her way to achieving that dream. Wu has received a student visa and has been accepted by Marian University in Indianapolis, Ind. With scholarships and other assistance, Wu has more than half the funds needed to attend Marian University. Her amazing surrogate moms are fundraising for her and started a YouCaring crowdfunding page to help her fulfill her dream.
After years of treatment at the Cincinnati Shriners Hospital, Wu is now looking forward to college and a career in the medical field.
Mary oversees the school nursing department for her Oakwood, Ohio school district. As a nurse, she assumed she knew about Shriners Hospital for Children — Cincinnati. “I always thought of it as the ‘burns’ hospital,” she said. So when Mary attended a presentation by Debbie Harrell, RN, MSN NE-BC, the hospital’s Director of Professional Relations at the Southwest Ohio School Nurses conference, she was surprised to learn there are many conditions treated at Cincinnati Shriners Hospital, and that one of the offerings is corrective pediatric plastic surgery. She discovered that Shriners Hospitals would treat physical issues that damaged a child’s self-esteem or caused bullying, like her teenage daughter Mollie’s very large breasts.
Many private insurance companies consider breast reduction surgery a cosmetic procedure. Shriners Hospital for Children—Cincinnati recognizes that a child’s quality of life shouldn’t depend on an insurance company’s approval.
“Since about her sophomore year in high school, Mollie would wear big shirts to hide her chest,” Mary explained. “She didn’t want to go to dances because she couldn’t wear the clothes in the teen department; she had to wear women’s sizes.” Mollie was active in sports, including cross-country track and basketball, and running was difficult and painful. She struggled with depression as a result of her appearance and discomfort.
When Mary learned that Cincinnati Shriners Hospital could offer her daughter a life without pain and embarrassment, she and Mollie talked about whether surgical breast reduction might be a solution.
They made an appointment to see Dr. Allison Lied, MD FACS at Cincinnati Shriners Hospital. “It is typical of girls with enlarged breasts to complain of shoulder, neck and upper back pain,” Dr. Lied explained. “They may avoid activities that make them extremely embarrassed, such as swimming, running or dancing. I have even seen young girls homeschooled because of severe embarrassment of their large breasts.” After speaking with Dr. Lied, Mollie made the decision to have the breast reduction surgery.
The first night was uncomfortable, but both Mary and Mollie say they couldn’t have asked for better care than they received at Cincinnati Shriners Hospital. “She was wonderful,” said Mary of Dr. Lied. “Conchi, Colleen . . . they were all so great,” Mary gushed as she tried to remember each name.
Eight weeks after her surgery, Mollie is now preparing for fall semester at the University of Cincinnati, armed with new confidence and self-esteem because of the expert care and unique compassion provided by the staff at Cincinnati Shriners Hospital. “It is rewarding to see the girls have a new sense of confidence postoperatively,” Dr. Lied added. And Mary now has a new tool in her arsenal as a school nurse. “Any family I see with a need, I now tell about Shriners Hospital for Children—Cincinnati. They aren’t just a burn hospital!”
When Max was born on September 22, 2012, Becky remembers seeing the faces of the delivery staff and knew something wasn’t right. Then she heard the doctor say, “Baby boy has a cleft lip.” After that everything was so rushed; they had to transfer him to another Florida hospital more equipped to handle his serious condition.
Becky and her husband, Hunter, spent time learning about cleft lip and palate while Max was in the hospital; when he came home later that month, they educated friends and family about his condition.
In February of 2013, Max had surgery to correct his cleft lip. Though the surgery went well, “the stress and financial burden it placed on our family made our anxiety even worse,” Becky said. They joined a support group to stay educated and make friends who understood what they were going through. It was there where they learned about Shriners Hospital for Children — Cincinnati.
Shortly after reaching out to Cincinnati Shriners Hospital, Becky received a call back and felt a huge weight lift from her shoulders. “They told me what Shriners does and how they can help our family,” Becky recalled. From the moment she and Max arrived for their first appointment at Cincinnati Shriners Hospital, Becky knew this was where they belonged. “It didn’t feel like we were just being cycled through a system,” she said. “Everyone was great, from security to the doctors, nurses and even the cafeteria staff.”
They met with Dr. Brian Pan, who created a plan for Max’s continued care, including surgery to repair his cleft palate. Becky immediately knew she could trust him. “During this process we’ve met a lot of doctors,” she said. “Dr. Pan is the most genuine and caring doctor we have encountered.”
Max will continue to visit Cincinnati Shriners Hospital for treatment as he grows. “The care that they provide at Shriners Hospital for Children – Cincinnati is fantastic, for Max and all the children. It’s just an amazing organization.”
Pageant-winning patient spreads awareness of brachial plexus injury
One of the best days in 13-year-old Maryann’s life was the day she was crowned 2017 Miss International Grand Latina. It was significant for many reasons, including the scholarships and community service opportunities it provided. These will allow Maryann to continue addressing one of her passions: increasing awareness of a condition called brachial plexus injury and, in turn, reducing the bullying and mockery often endured by those living with this condition.
Facing injury and pain
Maryann’s mother had no complications during her pregnancy until it was time to deliver. Maryann wasn’t in the correct birth position. The physicians were unable to perform a cesarean section and, as a result, Maryann sustained a brachial plexus injury during the process of her delivery.
The brachial plexus is a network of nerves that originate in the neck region and branch off to form most of the other nerves that control movement and sensation in the upper limbs. As a result of her injury, Maryann was left with a motionless right arm and would endure great pain, both physically and emotionally.
“I had a very beautiful childhood thanks to my parents, who always made me feel good,” said Maryann. “But as I grew older, things started changing. It began in fifth grade. Students began to make fun of me. I suffered from jokes, laughter and being compared to an animal. In middle school, they called me ‘dinosaur’ since I have a shorter right hand.” Maryann worked hard during physical therapy to address her condition, but she wasn’t seeing results. She saw many doctors, but was told no treatment or surgery could correct her problem.
Finding hope and healing
Fortunately for Maryann, one of her local physicians suggested contacting Shriners Hospitals for Children — Cincinnati for help. Maryann saw two physicians at the hospital who specialize in brachial plexus treatment. They prescribed Botox injections and surgery to help her gain more range of motion in her affected arm.
“The nurses and entire staff at the Cincinnati Shriners Hospital gave a light of hope to my life,” said Maryann. “Nothing was easy, but they gave me the support and security that I did not have before.”
Maryann entered the Miss International Grand Latina pageant prior to surgery as a source of motivation for recovery. As the winner, she now has the opportunity to learn and grow through her work with the community, sharing her story and helping others with disabilities.
“I want to share my life experience with other people who, just like me, have a physical problem, and be a role model,” said Maryann. “I know my arm has a limit, but my heart and my intelligence don’t.”
Johnny and Joy have a special connection beyond their burns; they bonded as brother and sister.
Johnny was born in Bolivia. His host parents (Sue and Tom Miele) met him when he was six months old and weighed 10 pounds. He had suffered burns when he was less than one week old. Based on his scaring and contractions, doctors believe he was burned in a scalding accident.
Before he could be considered for surgery, Johnny had to be “fattened up”. His host parents spent the next year nurturing him and naturally they fell in love with him. They had observed during Johnny’s time with them that he wasn’t reaching typical developmental milestones. He wasn’t crawling by 18 months. They believed he may have a developmental disability or motor development issues.
Johnny began his treatment at Shriners Hospitals for Children – Cincinnati for his burns and scar management but would have multiple surgeries in his future. Along the way, it was time to consider Johnny returning to Bolivia to be reunited with his parents. Unfortunately, his parents had left La Paz without informing any of the people who had arranged for his medical treatment. Since he had been with the Mieles since he was six months old and because they loved him so, they moved forward with adoption proceedings. Johnny was officially adopted in July 2006 at the age of four. They got him enrolled in Preschool Special Education services a few months later.
No sooner had Johnny been adopted by Tom and Sue, they were asked to be host parents again. That is when they met Ai Jing, who had been burned at a young age as well.That was in August 2006 and she was four years old. It certainly disrupted Johnny’s world at first but that didn’t last long.
When Ai Jing first arrived, she could not walk. Doctors at Shriners also believe Ai Jing was scalded as an infant. She would move around by pivoting on her right arm and throwing her torso forward. After she had spent a few months with them, they began calling her “Joy Ai Jing,” in response to the emotion she evoked in the Mieles’ hearts. Later this was shortened to Joy. She was not going to let her burns keep her down. As she has grown in security and love, they have observed her fierce desire to be independent. She always wants to try to perform tasks for herself. Even when her left hand still had contractures of her fingers, she managed to hold a fork or spoon to feed herself. She settled in to become a loved member of their family. As wondrous as her physical transformation has been, they are even more in awe of her spirit. “She is bright and happy and has allowed herself to give life another chance,” said Sue Miele. Joy was officially adopted in November 2012.
Johnny and Joy have been great for one another. They are built-in playmates as well as a support for one another. When they have their visits and surgeries at Shriners Hospitals for Children-Cincinnati, they are always by each other’s side. They ride the bus together, share in Shriners burn camp experiences, and are truly brother and sister.
“They are always a delight and have changed our lives for the better,” said Sue and Tom. “They work hard at everything they do and are true HEROES in our minds.”
Jing started life in a rural village in southwest China. Although the massive industrial city of Chongqing is only 60 miles away, in Jing’s village there was no central electricity and no modern plumbing. Her mother cooked meals over an open fire.
When she was 16 months old, Jing fell into the cooking fire, causing third-degree burns over 12% of her little body. She lost an ear and three fingers and was burned on her face, neck, and hand.
Her father took her to a Chongqing hospital for treatment. Jing endured three surgeries by age two, but it became clear she would need much more care.
Jing’s story attracted media coverage, which caught the attention of a local mothers group. The women started a blog to raise money and support for Jing. They became invested in her treatment, wanting the best care possible. Online research led them to Shriners Hospital for Children—Cincinnati, where it was clear she could get the comprehensive treatment she required. The “Blog Moms” made arrangements with a local foundation to send Jing to Cincinnati Shiners Hospital. ing’s parents agreed, understanding it would be her best chance to thrive and live a normal life.
In Cincinnati, plans went into motion to arrange care for Jing while in treatment. Laura, a busy mom of three, learned from a friend that the hospital was seeking a host family for Jing while she was in treatment. Laura’s 9-year-old son Eric overheard the conversation and chimed in, “We can do it, Mom!” That was all Laura needed to hear; Jing now had a Cincinnati family.
Jing arrived at Cincinnati Shriners Hospital in September of 2012, one week after her 2nd birthday. Her injuries and complications from initial treatment were challenging. She had airway obstruction which made it difficult to stay asleep for longer than 90 minutes at a time. The fire caused lost vision in one eye, and the Chongqing physicians had fused the eyelid. Jing’s mouth was so contracted from scar tissue that she could only consume bottles of formula.
Over the next year, Cincinnati Shriners Hospital Dr. Kevin Yakuboff FACS FAAPS, surgically released Jing’s mouth and neck, which allowed her to enjoy solid food. (Laura recalls that meatballs were a favorite!) Dr. Yakuboff also corrected her eyelid for a more symmetric, balanced appearance. By her third birthday, Dr. Christopher Gordon FACS FAAP surgically altered her jaw, a major advancement which opened her airways and allowed her to sleep through the night for the first time.
Throughout treatment at Cincinnati Shriners Hospital, Laura kept the Blog Moms updated so they could communicate with Jing’s parents. It eventually became clear Jing needed to stay in Cincinnati permanently. Jing had become a part of Laura’s family, so much so they decided to officially adopt her. “She’s a joy—I wake up looking forward to seeing her,” said Laura of Jing, who started kindergarten in August.
Halie recently treated Shriners Hospital for Children – Cincinnati to an impromptu concert in the hospital lobby before heading home to Virginia with her family. Halie, who at 15 plays banjo and guitar, sang and played for staff and visitors waiting for an appointment. On this day, only remnants remain of the severe blisters and rash that covered her body just two weeks prior. Her mother Hollie feels divine guidance put them on the rapid path from an urgent care clinic in Norton, Virginia to Cincinnati Shriners Hospital.
One Tuesday in early May, Halie came home from her JV baseball game and removed the glare-shielding “Eye Black” from her cheeks, where she noticed a slight rash. The next day, it was still there; friends commented that it looked like she had been crying. By Friday, she developed a sore throat and her eyes were beginning to swell. Saturday morning, blisters developed on Halie’s lips and rash had spread down her arms and hands. Her mother took her to the local urgent care where they tested for strep throat. Though the results were negative, they gave Halie antibiotics and steroids and sent her home.
With no improvement, they went to the local hospital which transferred Halie to a children’s hospital in Johnson City, over an hour away. “As a mom and nurse, I thought this shouldn’t progress,” said Hollie, “but after three doses of antibiotic the rash was getting worse.” At Niswonger, they began photographing progression to share with colleagues. Luckily, one of those colleagues was Dr. Phillip Chang of Cincinnati Shriners Hospital. Dr. Chang suggested Stevens-Johnson Syndrome, a rare, serious disorder of skin and mucous membranes. If untreated, it can become TEN, toxic epidermal necrolysis. “The doctor [at Niswonger] was very concerned by how quickly Halie’s skin was coming off,” said Dr. Chang. “He knew Cincinnati Shriners Hospital had been treating SJS for years, and contacted us.” Monday morning, they were on the way to Cincinnati.
“This medication-triggered syndrome is very rare, but we have seen an increase in the past three years,” Dr. Chang stated. “Cincinnati Shriners has had six cases this year, more than the past two combined.”
Nutrition is a key component in treating SJS, and Cincinnati Shriners Hospital is a research leader in the field. By the time she arrived, Halie’s blistering had spread into her nose, mouth, and throat, making it painful to eat. But when mention of a feeding tube came up, she managed to drink the specially-prepared “core shakes”—first three, then four a day. “I had blisters on the inside of my nose,” said Halie. “But when they said that’s where the feeding tube goes, I drank the shakes!” Within a few days and the expert care of Cincinnati Shriners Hospital staff, her once-weeping blisters were healing and inflamed rashes subsiding.
Now, as she waited for the final check-up before driving home, Halie shared a beautiful bluegrass ballad, a grateful performance for Shriners healing care.
In April 2009, 6-month-old Gavin Bennett came down with a low-grade fever that escalated very quickly. Gavin had contracted meningitis which caused purpura fulminans, a rare blood and tissue disorder.
Gavin was rushed by ambulance to the nearest hospital in rural South Dakota. Doctors there told Gavin’s mother, Echo, that her son would need more specialized care than they could provide, and were concerned that he would not survive the trip to the next hospital.
Miraculously, he made it through those first few hours and was then quickly air-lifted to a major trauma facility in Sioux Falls. The next few days were excruciating for Echo. “Gavin spent three days on life support,” she remembers. “We had exhausted all of our options. I just couldn’t imagine my world without him. But I knew we couldn’t give up.”
A few more days passed, and when he became stable enough, Gavin and Echo made the trip to Children’s Mercy Hospital in Kansas City (Missouri), where Echo received more devastating news. Because of the infection in Gavin’s bloodstream, circulation to his extremities had been comprised.
Doctors recommended amputations to his fingers and legs. But Echo was determined to explore other options. “Medical professionals were telling me they didn’t know what to do,” said Echo. “I kept telling myself there has to be someone else who knows how to deal with this disease.”
The medical team at Children’s Mercy then started researching who would be best suited to help Gavin. Within an hour, the team came back to Echo and told her she would be leaving for Cincinnati. “I knew if Shriners Hospitals for Children® couldn’t help my son, no one could,” said Echo.
By the time the plane landed in Cincinnati, Echo wondered if she would ever stop crying. But once they arrived at the hospital, the expert and compassionate staff gave her plenty of guidance and support and helped her cope with her extremely difficult situation. “I knew Gavin was getting the best medical care and attention he needed. It made all the difference to me,” said Echo.
During the eight weeks Gavin spent at Shriners Hospitals for Children® — Cincinnati, Gavin showed everyone just how tough he really is. Gavin walked away from the hospital without amputations or neurological damage. Today, he is an energetic 2-year-old who loves to jump on trampolines, run around, and talk to anyone. “When this happened, I didn’t know where my son was going or what our lives would be like,” said Echo. “Without Shriners Hospitals for Children®, I know Gavin’s outcome would not have been this successful.”
Eight-year-old Claudia came to the United States from the West African country of Benin where she lived in a village with her mother and siblings. At age three, she began to develop a disfiguring bony tumor under her right cheek. Her mother took her to a local clinic, but no one was able to help. Over time the tumor grew, and Claudia’s world became smaller; she was hidden away to avoid stares and whispers.
Claudia later recounted how she and her mother would travel from village to village, “walking, walking…” seeking help for the growing tumor. One day, an intermediary with Childspring International, an Atlanta-based organization that pairs children from developing countries with life-saving surgeries, crossed paths with Claudia and her mother and brought her to the attention of the group. The staff of Childspring first tried to connect Claudia with a hospital in Texas, which considered and ultimately rejected her very challenging case. After several months of searching, they presented the challenge to the world-class pediatric plastic surgeons at Shriners Hospital for Children—Cincinnati. With careful consideration, the team at Cincinnati Shriners Hospital, including pediatric plastic surgeons Drs. David Billmire, Ann Schwentker, and Chris Gordon, decided that, although they had never before attempted this type of dangerous surgery, Claudia was not a child that they could turn away. They wanted to help her. Chief of Staff Dr. Petra Warner agreed.
So Claudia left the only world she knew and traveled halfway around the world to Cincinnati, Ohio. The intermediary helped her mother understand that Claudia could have a different quality of life with this surgery, and she would be safe and cared for. Cincinnati Shriners Hospital staff arranged for Claudia to stay with the Holland family during her preparation and recovery. The Hollands had hosted and eventually adopted another Shriners child, 4-year old orphaned burn patient Jing, two years earlier. They understood that a child is a child, no matter the circumstances. “We hosted Claudia because we can,” Laura Holland said.
During her stay, Claudia became friends with her young host Jing; the two became inseparable. Jing, who had been given a second chance at life by Cincinnati Shriners Hospital, let Claudia know that this was a good place, a place where they welcome all who need help.
The tumor was now growing so rapidly that it threatened to block Claudia’s airway. The surgical team, led by Drs. Schwentker and Gordon, worked for more than eight hours on the initial surgery. Claudia stayed in Cincinnati for nearly eight months to complete her treatment and begin the healing process.
As her healing progressed, Claudia was eager to go back home to her mother and siblings in the village where she was once scorned. And because the brave, talented, and compassionate team at Cincinnati Shriners Hospital was willing to take a risk when no other would, Claudia can now go as far in life as she chooses.