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Annual Circle of Love donation drive gives toys to kids across Kentucky

The holiday season is quickly approaching and for the 31st year, the UK community is preparing for the annual Circle of Love, an event that provides UK employees and students the opportunity to fulfill the wishes of hundreds of children in need from 10 Kentucky counties.

Thanks to the generosity, compassion and teamwork of UK HealthCare employees, volunteers and students, all Circle of Love children have been sponsored for 2017. At 8 a.m., Friday, Dec. 8 a troop of UK HealthCare Circle of Love committee members will help Santa Claus load school buses and vans with gifts for hundreds of local children and families needing assistance during the holiday season.

Circle of Love is organized by UK Volunteer Services and UK Hospital Auxiliary. For further information, contact Katie Tibbitts, manager of Volunteer Services at 859-323-6023.


Next steps:

  • Interested in donating to the Kentucky Children’s Hospital? Visit Give to KCH to learn more about ways you can support our mission.
  • When your child is sick or hurt, you want the best care possible. That’s exactly what you get at Kentucky Children’s Hospital. Learn more about our services.

 

UK psychologist helps sick kids manage the stress of treatment

Treatment for any serious medical condition can be daunting for even the most fearless adults. But for children who deal with serious illness, fear, anxiety and a lack of understanding can make it difficult for them to cope with their treatment.

Dr. Meghan Marsac, pediatric psychologist and assistant professor in the UK College of Medicine, saw how many parents and children struggled to navigate the stress and logistics of treatment.

“When I was helping kids and parents adjust to what life was like with pediatric cancer, there were a lot of things we were teaching over and over again,” Marsac said. “Parents wouldn’t know these things. You’re not supposed to have a kid with cancer.”

And so Cellie was born. Designed by Marsac during her fellowship at Children’s Hospital of Philadelphia, the Cellie Coping Kit was developed for children ages 6-12, and includes of a plush toy named Cellie, a deck of cards with coping and communication techniques, and a book for caregivers. The first Cellie kit was geared toward children with cancer, but has since been adapted for children with sickle cell disease, traumatic injuries and food allergies. A kit for eosinophilic esophagitis, an allergy condition that causes inflammation of the esophagus, is in the works, as is a kit for the siblings of children with illness or disability.

How Cellie helps

The kit is designed not only to comfort children during their illness, but also to provide them with the tools they need to understand their treatment and communicate their feelings.

The coping cards address various “stressors” children can face, including scary procedures (such as needle sticks), emotional stress and side effects of treatment such as nausea or hair loss. The kit also addresses how to manage situations such as missed school or playing outside. The caregiver book parallels the cards, giving parents the advice on how to address their child’s concerns.

“We reviewed the cards and that helped [our son] understand that some of the feelings he has are similar to other children here,” said one parent. “So he didn’t feel like he was alone.”

For example, the card in the child’s kit that addresses a fear of needle sticks lists several tips, including “squeezing Cellie tight and looking at Cellie until it is over” or “telling your nurse or parent a story.”

“The pain tips help me,” said one child. “The pain thermometer, the faces, and the belly breathing card…that helped me a lot.”

Working together to help families cope

Much of Marsac’s research is centered around developing and evaluating programs designed to help parents and children manage medical conditions and preventing long-term emotional impairment after illness or injury.

Cellie was initially developed to help Marsac’s pediatric cancer patients, but she recognized the need for coping tools for children with a variety of conditions. The Cellie Coping Kit for sickle cell disease shares many components with the cancer kit. The food allergy kit was designed after Marsac’s conversation with one of her students about the dearth of allergy resources for children.

Marsac and her team worked directly with doctors, nurses, psychologists, child-life specialists and families to develop the kit. Extensive research was conducted to determine what was most difficult for families when it came to navigating treatment and what medical teams could do to assist families. Families reported that the kit was a useful tool in promoting conversations about illness in the family.

“[Our daughter] just become more aware about [her condition] by reading the cards and asking a lot of questions,” said one parent. “Some of the things on the cards she didn’t understand before, so she has more of an education now.

“This is all the stuff we’ve been going through.”

Children who learn early how to discuss their illness are better equipped to manage it better as adults, Marsac said.

“We know that physical and emotional health are intertwined,” she said. “Our team’s goal is to support both parts of health, and the kits are designed to walk families through treatment.”


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Photo gallery: WWE star visits Kentucky Children's Hospital

WWE star brings cheer to patients at Kentucky Children’s Hospital

On Tuesday, Nov. 29, WWE star wrestler Jinder Mahal visited kids, families and staff at the Kentucky Children’s Hospital, and our wrestling superfans were thrilled to meet him!

Check out the photos below.


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Join us this Saturday for our annual breakfast with Santa

Santa will make his annual visit to UK HealthCare this weekend, along with UK athletes, cheerleaders and mascots to delight and entertain Kentucky Children’s Hospital patients and UK HealthCare families. Breakfast will be provided at 9 a.m., Saturday, Dec. 2 in the UK Chandler Hospital Dining facility in Pavilion A.

Children will have the opportunity to share their holiday wish list with Santa, sing carols and receive goodies handed out by UK athletes and volunteers.

Tickets are available now in the Pavilion H/A corridor from 11 a.m.-1 p.m. until sold out. For more information, call Volunteer Services at 323-6023.


Next steps:

  • Learn more about the Kentucky Children’s Hospital, which provides more than 30 advanced sub-specialty programs in children’s health.
  • Interested in donating to the Kentucky Children’s Hospital? Visit Give to KCH to learn more about ways you can support our mission.

Listen: UK at the Half discusses exciting KCH partnership

Dr. James Quintessenza, chief of pediatric cardiothoracic surgery at UK HealthCare, and Dr. Scottie Day, interim chair of the UK Department of Pediatrics and physician in chief at Kentucky Children’s Hospital, were featured during “UK at the Half,” which aired during the UK vs. Utah Valley basketball game radio broadcast on Nov. 10.

The doctors talked about UK’s new partnership with Cincinnati Children’s Hospital that will offer the best pediatric heart care in the area.

“UK at the Half” airs during the halftime of each UK football and basketball game broadcast and is hosted by Carl Nathe of UK Public Relations and Marketing.

To hear the latest episode, click on the play button below.


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Going to a trampoline park? Reduce injury risk with these tips

Now that the weather has gotten chillier, you may be looking for fun indoor activities to do with the kids. If you’re headed to an indoor trampoline park, know that while they do encourage physical activity, they can also be dangerous. The Consumer Product Safety Commission estimates that over 100,000 children visited emergency rooms last year due to trampoline accidents, and there’s even a fracture that some doctors call “trampoline ankle.”

If you and your kids are heading to an indoor trampoline park for a birthday party or just for a day of fun, keep these tips in mind:

  • Always have adult supervision. Children should only jump with a responsible adult around.
  • One person at a time. Be aware of other jumpers.
  • Discourage double-jumping. This is when one person lands just as another person is attempting to jump.
  • No flips or somersaults. These can lead to head and neck injuries, wrist sprains or fractures, or other serious injuries.
  • Wear comfortable clothing that does not restrict your movement.
  • Don’t wear jewelry or other sharp objects while jumping. Empty your pockets and don’t wear a hat while jumping, either.
  • Avoid peak hours. Go during less busy times so there are fewer people and fewer distractions.
  • Stay in age-appropriate areas. This includes adults!

The American Academy of Orthopaedic Surgeons recommends that children under 6 should not jump on trampolines or visit indoor trampoline parks at all. Children’s bones are still growing, so jumping on a trampoline poses a high risk of injury, according to Dr. John Draus, a pediatrician at UK HealthCare and director of the UK Pediatric Trauma Program.

Most injuries take place because of collisions while jumping, incorrect landings or falling off a trampoline onto a hard surface. Always follow the safety guidelines set forth by the trampoline park.


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First steps to take if your baby has Down syndrome

If you’re expecting a baby who has been diagnosed with Down syndrome, you may have many questions and concerns.

While this diagnosis may seem overwhelming, there is no need for panic – or despair. Although having Down syndrome means your baby will face challenges, many people with Down syndrome live full, productive, happy lives.

The most important thing you can do is educate yourself about the resources and support available to you and your family so that you can become your baby’s best advocate. Traci Brewer, executive director of the Down Syndrome Association of Central Kentucky (DSACK), offers these tips:

Your baby’s health. Children born with Down syndrome have a higher rate of heart abnormalities and other medical concerns than the general population. Your first step is to ensure that medical professionals are following the healthcare guidelines recommended by the National Down Syndrome Society. Your obstetrician and later your pediatrician may not have a great deal of experience with children with Down, so it is up to you to advocate for screenings at birth to rule out potential health risks. If you need help making a case for these screenings, enlist the aid of a genetic counselor.

Early intervention. Federal law mandates that states must provide early intervention for children with certain conditions, and Down syndrome qualifies. In Kentucky, this program is called First Steps. First Steps provides therapists such as speech-language pathologists, occupational therapists and physical therapists that will come to your home for therapy sessions. Make sure your hospital or pediatrician makes a referral to First Steps before you leave the hospital.

Fear. It’s normal to feel scared, but know that you are not alone. Try to relax, get to know your baby and enjoy your time together. Realize that many of your struggles are the same as those faced by any new parent. Statistics have shown that married couples with children who have Down syndrome have a lower rate of divorce than the general population, and siblings are often more compassionate and well-adjusted because of their relationship with their brother or sister with Down syndrome.

Get connected. The best resource for new parents will always be other parents. Many organizations offer free resources and lists of local parent groups. Locally, the Down Syndrome Association of Central Kentucky hosts new parent dinners, coffee chats, special events and much more to help parents connect with other parents of children with Down syndrome. DSACK can be found on the web at www.dsack.org.

Take it one day at a time. Stay informed, get connected and remember that you are doing your best. You don’t have to be a superhero, and just like other parents, you will make the best decisions you can. Love your children and try to keep everything in balance. Know that the positives far outweigh the negatives. People with Down syndrome go to school, have meaningful jobs and make significant contributions to society.


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Pediatric patients play ball with UK athletes at No Limits camp

Don’t miss the video at the end of this post to see highlights from this year’s camp!

Patients from Kentucky Children’s Hospital and Shriners Hospitals for Children Medical Center Lexington learned there are no limits to what they can do at the No Limits Baseball and Softball Camps this past Saturday.

After moving to the UK medical campus on South Limestone earlier this year, Shriners needed a new venue for the annual No Limits event. UK Athletics stepped up to the plate, offering Cliff Hagan Stadium and John Cropp Stadium as well as some help from the members of the UK Baseball and UK Softball teams, including head coaches Rachel Lawson and Nick Mingione.

Throughout the day, patients had a chance to practice and develop their baseball and softball skills with drills in batting, catching, throwing and nutrition. A member of UK Baseball or UK Softball accompanied their “buddy” to each of the stations to help them one-on-one.

Fun on the field for patients and parents

JP David, who has participated in the No Limits Camp in previous years, was able to get in on the fun once again. For 12 years, David has seen physicians at Shriners and KCH to receive care for cerebral palsy. David’s mother accompanied him to the camp, as she’s done in previous years. She appreciates that Shriners gives patients the opportunity to have typical childhood experiences.

“He would love to just keep going but his body won’t let him,” she said. “But when they host events like this, he realizes he’s not the only one and he feels like a normal kid.”

For the first time, patients at KCH were also invited to participate in the camps. Jaxon Russell, a big fan of UK Baseball, was glad to be at Cliff Hagan Stadium. Russell has undergone two open-heart surgeries in the first five years of his life. He is also being treated for pulmonary atresia. His parents, Shannon and Miranda, were excited to be a part of the big day.

“For a program like this to take time out of their days to make these kids smile and have a memorable moment is tremendous,” Miranda said. “It’s something that they’ll never forget.”

After Jaxon’s diagnosis, Shannon and Miranda founded a nonprofit organization that helps other children diagnosed with heart conditions enjoy the game of baseball.

Long-lasting benefits

Illness can often take away the opportunity for young patients to have the same experiences as other children or their siblings. Sometimes things that happen outside of a clinical setting can be incredibly beneficial for health and wellness, said Dr. Scottie Day, physician-in-chief at Kentucky Children’s Hospital.

“The opportunity for a child to attend this camp gives them an experience that proves to have a long-lasting effect on psychosocial development, including self-esteem, peer relationships, independence, leadership, values and willingness to try new things,” he said.

Three patients who attended the camp also will have the opportunity to represent Kentucky in the 2018 Shriners Hospitals for Children College Classic next year in Houston, where they will serve as Kentucky’s batgirls/batboys during the tournament.


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UK begins Pediatric Heart Surgery Program with Cincy Children’s

Last month, UK HealthCare and Cincinnati Children’s Hospital Medical Center completed the first heart surgery as part of a new partnership to provide outstanding pediatric cardiac services for patients in Kentucky and beyond.

The Joint Pediatric Heart Surgery Program is the culmination of three years of work by the two organizations and was announced on Friday. The “one program, two sites” model combines the strengths of UK HealthCare’s advanced subspecialty care with one of the country’s leaders in children’s healthcare, Cincinnati Children’s.

Dr. James Quintessenza, a renowned pediatric cardiothoracic surgeon, was recruited to lead the program. Quintessenza arrived in the Bluegrass last December after having built a reputation as one of the leading cardiothoracic surgeons in the U.S.  He had served at All Children’s Hospital (later named All Children’s Hospital Johns Hopkins) in St. Petersburg, Fla., for 26 years, including 19 years as medical director and chief of pediatric cardiac surgery.

“I’ve found that in Lexington, we have a team of people who are dedicated, caring, experienced and striving to provide the highest-quality care possible for these patients and their families,” said Quintessenza, who is often referred to as “Dr. Q” by patients and staff.

“Pediatric open-heart surgeries, heart catheterizations and electrophysiology procedures are underway at Kentucky Children’s Hospital. The patients and families have been so supportive and thankful for the care we are providing that allows them to receive care closer to their home, their families and their support system.”

Successful surgery

On July 5, Quintessenza performed a complex open-heart surgery on Magdalen Wilson, an infant from Nicholasville, Ky., born with several congenital heart defects.

Magdalen’s surgery was completed at KCH as part of the joint program with Cincinnati Children’s. After Magdalen’s parents, Lauren and Thom Wilson, met with UK pediatric cardiologist Dr. Majd Makhoul and Dr. Q, they felt comfortable and confident in receiving their care at KCH.

“We were impressed that several of Dr. Q’s support staff followed him from his previous location because of his leadership and surgical outcomes,” Thom Wilson said. “At this point, through much prayer and discernment, we decided to pursue Magdalen’s surgery with the joint program at UK.”

With the institution of the “one program, two sites” model, patients from Kentucky now have the opportunity to have surgical procedures, diagnostics and therapeutic interventions performed in Lexington. At all times, recommendations for care are based on what is best for patient safety and quality, allowing families to stay closer to home when appropriate.

“Every member of the joint heart program team – which includes more than 100 physicians, nurses, technicians and other specially trained staff – has one main goal and one agenda, and that is to provide the best care possible to our patients,” said Bo Cofield, UK HealthCare’s chief clinical operations officer. “It was very important for our patients and their families that we do everything we can to provide the highest-quality services and care, and we are confident we have that ability with this program.”

Building a world-class program

UK HealthCare officials voluntarily made the decision to pause pediatric cardiothoracic services in 2012, and a task force was charged with providing recommendations regarding the future of the program. Eventually a Letter of Intent was signed with Cincinnati Children’s in 2015, and an agreement was finalized in September 2016.

While UK HealthCare was working toward the goal of restarting a program to perform complex surgical procedures for pediatric heart patients, it was paramount to be able to deliver the highest-quality services. These standards led to the decision to partner with Cincinnati Children’s, recently ranked third among the nation’s pediatric hospitals by U.S. News and World Report.

Other key components vital in resuming pediatric heart surgeries have been the recruitment and hiring of a world-class team including pediatric cardiac anesthesia, pediatric cardiac critical care, pediatric perfusion, specialized physician assistants and advanced practice nurse practitioners, among others. UK HealthCare has invested in infrastructure enabling success through telehealth and other technologies, specialized equipment and supplies, while staff and faculty have participated in intense on-site training at Cincinnati Children’s.

“Today, this program represents the culmination of three years of work between Cincinnati Children’s and the University of Kentucky to reopen the pediatric cardiac surgical program in Lexington,” said Dr. Andrew Redington, executive co-director of the Heart Institute and chief of the Division of Pediatric Cardiology at Cincinnati Children’s. “By establishing a ‘one program, two sites’ collaboration, we ensure that children will get the right operation, in the right place and at the right time. We are all delighted that the first cases have done well, and anticipate ongoing success in the years to come.”

For the Wilsons, everyone in the family is able to breathe a little easier these days, and Magdalen is enjoying her freedom and health, her mother said. She is being cared for locally by Makhoul since being discharged after her surgery.

“Great love has been shown to Magdalen and our family along this journey,” Lauren Wilson said. “Magdalen’s life is a blessing, and one day she will know about the many hands and hearts at Kentucky Children’s Hospital and beyond that God used to restore her to health. We are truly grateful.”


Next steps:

  • The Joint Pediatric Heart Program provides the full spectrum of high-quality heart care – from assessment and diagnosis to complex surgery and post-surgical care. Learn more about the partnership.
  • Mackenzee Walters was diagnosed with hereditary pancreatitis, a painful condition that had taken the lives of several of her loved ones. Specialists at KCH and Cincinnati Children’s teamed up to help Mackenzee find relief from her painful disease. Read her story.

UK, Cincinnati Children’s team up to help 11-year-old with painful illness

Perched on an examination table at the Kentucky Clinic, Mackenzee Walters revealed a collection of bruises and scrapes on her knees – the traces of trampoline topples and skateboarding scuffs.

The 11-year-old shrugged off the purple blemishes while reviewing her summer routine with Kentucky Children’s Hospital (KCH) pediatric gastroenterologist Dr. George Fuchs. These were minor battle wounds – nothing comparable to the pain she knew just months ago.

Mackenzee was born with hereditary pancreatitis, an inherited disease that causes uncontrollable pain. The condition is marked by inflammation of the pancreas, the organ that makes enzymes to break down and digest food and that produces insulin necessary for blood sugar regulation.

Mackenzee’s life has been filled with extended absences from school due to pain and frequent hospitalizations to manage flare-ups of her pancreas. Since the age of 3, she has taken potent opioid medications in an attempt to control pain and followed a strict diet barring her from the foods children love, such as macaroni and cheese and mashed potatoes.

But this year, after a surgical intervention coordinated through a multidisciplinary team at KCH and Cincinnati Children’s Hospital Medical Center, Mackenzee has adjusted to a new existence — one free of sharp, unrelenting pain and miraculously, without a pancreas.

Innovative treatment for hereditary pancreatitis

In January, surgeons at Cincinnati Children’s performed an innovative procedure reconstructing Mackenzee’s gastrointestinal tract to function without the source of her pain: the pancreas.

Fuchs, Mackenzee’s primary gastroenterologist at KCH, in collaboration with the pediatric medical and surgical teams at Cincinnati Children’s, determined that Mackenzee was a candidate for a Total Pancreatectomy with Islet Autotransplantation (TPIAT) surgery.

Cincinnati Children’s Dr. Jaimie Nathan removed Mackenzee’s pancreas and sent the organ to the islet facility where the islets – or the cells within the pancreas that produce insulin needed for glucose metabolism – were isolated. The islets were returned within hours, with Mackenzee still on the operating table. Nathan transplanted the islets back into her liver, where the cells took up residence and resumed their essential function. Cincinnati Children’s is one of few children’s hospitals in the nation to offer the innovative TPIAT procedure.

The surgery is a new offering for pediatric patients ages 4 and older expecting a life of pain stemming from the disease. Fuchs said scientific knowledge of hereditary pancreatitis has expanded throughout the past decade, although many generations have suffered without medical treatment or relief.

Inflammation of the pancreas can lead to permanent damage and eventual organ failure. Until recently, doctors have focused on trying, with only limited success, to manage symptoms through dietary modification and pain management. Because eating triggers the flare-ups, many children diagnosed with the condition become frail and undernourished.

“If that individual’s eating is one of the stimulators of the pain, or the activity of the pancreatitis, then it’s just awful,” Fuchs said of the disease. “It inhibits their ability to take in food because it hurts. So, they can become undernourished. It can be very difficult for these kids, very difficult.”

Fuchs and Mackenzee at an appointment at the Kentucky Clinic.

‘All we’ve ever known’

Mackenzee is part of a long line of family members to inherit pancreatitis, although most of her relatives died early in life from complications related to the disease. Those victims include Mackenzee’s biological mother and an aunt who died at age 35. Mackenzee’s grandmother died at 36 from complications after an experimental procedure. Several of Mackenzee’s cousins also succumbed to the disease, one passing away at age 23 and another at 4 years old.

Kim Walters is Mackenzee’s mother and biological aunt and the oldest surviving family member with hereditary pancreatitis. She said until Mackenzee’s surgery, members of her family accepted the tragic fate of dying early or living with chronic pain. Walters, who is insulin-dependent because of damage to her pancreas, expected Mackenzee to have a similar fate or endure severe pain for the remainder of her life.

“Hereditary pancreatitis is pretty much all we’ve ever known in my family,” Walters said. “It’s very excruciating every day. I had my children naturally without an epidural – I would rather have a child every day for the rest of my life than live with this disease.”

Teaming up with Cincinnati Children’s

In December 2015, after seeing many doctors around the country, Walters consulted with Fuchs at KCH. At the time, Mackenzee was suffering from unmanageable pain and taking a potentially dangerous level of medications without much relief. After ruling out the possibility of increasing doses of medication, Fuchs recommended Mackenzee as a candidate for the TPIAT surgery at Cincinnati Children’s. He contacted colleagues at Cincinnati Children’s and started the process of referring her for surgery.

“There was just nothing else. There were no other options to give her anymore because she was on [opioid] doses adults should take,” Walters said. “There was just nowhere else to go.”

Traumatized by losing her mom to an experimental surgery and seeing her daughter suffer in spite of 17 experimental surgeries, Walters was at first skeptical of the operation. Mackenzee was also afraid of undergoing a complex surgery removing an essential organ. But Fuchs, along with Dr. Maisam Abu-El-Haija, medical director of the Pancreas Care Center, and Nathan, the surgical director of the Pancreas Care Center at Cincinnati Children’s, explained every detail of the process and provided examples of real cases where children had recovered and enjoyed better lives.

“I came to the conclusion, if nothing else if she would just be pain-free,” Walters said. “If God chose to take her six months later, at least she would have six months of no pain. And that was our goal: to make her not have pain and be able to play and do what normal kids do.”

The 12-hour surgery was conducted at Cincinnati Children’s, with general follow-up appointments at KCH. Since her surgery, Mackenzee’s islets have rebounded in producing insulin. In fact, the amount of supplemental insulin she needs each day has dropped, and she no longer requires pain medication many months following her operation.

“I would predict she has a very high likelihood of becoming insulin independent,” Fuchs said. “She will no longer live in the hospital, which is what these children do before the procedure because they are in so much pain. I anticipate she will get on with her life, including getting into mischief as most kids do when they become teenagers. Hopefully go on to have a productive, full life.”

Helping others with the disease

People from Appalachia experience among the highest rates of hereditary pancreatitis in the nation. Fuchs hopes to extend advanced interventions and therapeutic options to affected children in Eastern Kentucky and surrounding areas.

In his first year working at KCH, Fuchs saw more cases of hereditary pancreatitis than in 15 years at his previous institution in Arkansas. Mackenzee’s family lives in Kenova, W. Va., but she receives primary gastrointestinal care and pain management services from Fuchs and Dr. Lindsey Ragsdale, a palliative and pain specialist at KCH. The ability to partner with Cincinnati Children’s Pancreas Care Center reduced the amount of travel time for Mackenzee and her family, keeping routine healthcare services more convenient while also giving them access to the services of a nationally renowned pediatric pancreas and surgery program.

Dr. Maisam Abu-El-Haija said the success of Mackenzee’s case is the result of like-minded doctors sharing a commitment to improving a child’s condition. The collaboration represented multiple disciplines and experts, including endocrinologists, pain specialists, psychologists, gastroenterologists, and surgeons at Cincinnati Children’s and KCH.

She commended Fuchs for initiating conversations with Cincinnati Children’s and pursuing a surgical intervention he believed would achieve the most advantageous outcome for the child, even if not performed at his own institution. She thinks the ability to collaborate with KCH will ensure more hereditary pancreatitis children will receive advanced surgical care without requiring the child’s primary care institution to “reinvent the wheel.”

“It stemmed from having common personalities and common goals,” Abu-El-Haija said. “I really value physicians like Dr. Fuchs. Basically, we both clicked on what we think is important, which is the outcome for the patient. Patients are best served closer to home, but no institution has everything.”

No longer worried about the future

Kim Walters said nothing makes her happier than to see her Mackenzee flipping on trampolines, eating birthday cake and being well enough to sleep over at a friend’s house.

Fuchs, who said most children gradually recover from the TPIAT over a prolonged period, considers Mackenzee’s rapid recovery an anomaly. Mackenzee came off a ventilator soon after surgery, and off of the feeding tube for nutritional support five weeks after surgery. She left the hospital prior to the expected discharge date, returning to school to finish the spring semester.

Walters doesn’t worry as much about Mackenzee trying once unthinkable foods to digest, such as steak, or passing out from pain at a friend’s house. The thought of losing Mackenzee doesn’t haunt her anymore. After scouring the nation looking for options for Mackenzee, she found an answer in Fuchs and the providers at KCH and Cincinnati Children’s.

“To discover that it’s right here at your back door where they’ve actually accomplished the research and figured out how to give her a better life and prolong her life, I was a little dumbfounded, I guess,” Walters said. “Because everyone thinks living in the boondocks, we don’t have good doctors, but we have some of the best doctors in the world. From Cincinnati to here at UK, there are some of the best doctors.”

Today, Mackenzee radiates with energy and giggles about her second belly button, a token left from her surgery. Mackenzee now thinks about the future and wants to become a fashion designer. She lists off all the activities she can do now, like help her mom cook and mop the floors.

“I can eat. I can go to school,” Mackenzee said. “Now I have more than just one friend. I can do other stuff than just lay in bed all day. Do different things.”


Check out our video that tells the story of Mackenzee’s journey and the collaborative work between KCH and Cincinnati Children’s that helped her find relief from her debilitating disease.


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