As Medical Director of the Comprehensive Otology and Hearing Program, Dr. Puricelli balances patient care with research focused on expanding diagnostic and treatment options. One of his current projects examines gaps in hearing loss care, including factors associated with incomplete diagnostic evaluations. In partnership with Genomic Answers for Kids, his team is also applying advanced long-read sequencing to better identify genetic causes of hearing loss. 

His work also explores microscopic ear anatomy and potential treatments such as intracochlear gene therapy delivery. 

Beyond hearing care, Dr. Puricelli is helping advance treatment for babies with complex airway needs. He was lead author of the first international consensus guidelines for perinatal airway management and, in collaboration with the Fetal Health Center, is co-directing a 54-site prospective study designed to better determine airway needs in fetuses with craniofacial skeletal conditions, head or neck masses and other conditions. 

Through this combination of clinical care and research, Dr. Puricelli and teams across Children’s Mercy are working to better understand complex pediatric ENT conditions and translate those insights into improved approaches to care.

Intense. Sharp. Continuous. Unrelenting. Pain. 

For Tim, a sickle cell pain crisis, medically known as a vaso-occlusive crisis (VOC), isn't just discomfort. It's pain so intense it can bring life to a halt. 

Other times, he said, the pain feels like "somebody really big is sitting on your chest," making it difficult to breathe. 

Tim gets a visit from Carter Jensen of the Kansas City Royals. 

Tim has lived with sickle cell disease since he was 1 month old. The inherited blood disorder has shaped nearly every chapter of his life, bringing frequent hospitalizations, missed school days, surgeries and complications that most young adults never have to consider. In 2025 alone, Tim was admitted to the hospital approximately 11 times because of severe pain crises. After a lifetime of battling the disease, he is now making history as the first Children’s Mercy patient to receive gene therapy for sickle cell disease, marking a milestone both for him and for the future of care at Children’s Mercy.  

A lifelong battle 

Diagnosed shortly after birth, Tim became a familiar face at Children’s Mercy. Hospital admissions, blood transfusions and pain management became part of his routine. Despite the challenges, he developed a determination that impressed his care team. Over the years, he learned how to advocate for himself, take ownership of his health and navigate the realities of a chronic disease that follows patients everywhere, from classrooms and family vacations to major life milestones. 

"I missed so much school," Tim recalled. Yet he refused to let sickle cell disease define him. Even when complications from the disease led to hip surgery shortly before prom, he worked relentlessly to regain his mobility so he could attend. "I wasn't sure I was going to be able to make it," he said. "I was still having trouble standing on my own two feet." Ultimately, he made it to prom and graduated from high school in 2024. Looking back, Tim says one thing has always remained true: "I never let sickle cell keep me down."  

Sickle cell disease is an inherited blood disorder caused by a change in hemoglobin, the protein in red blood cells responsible for carrying oxygen throughout the body. Instead of remaining round and flexible, red blood cells become rigid and sickle-shaped. Those cells can block blood vessels, reducing oxygen flow and causing severe pain as well as serious complications affecting organs throughout the body. 

Shabnam Arsiwala, MD, director of the Sickle Cell Disease Program at Children’s Mercy, explains that sickle cell disease affects much more than blood. "Because blood flows everywhere, it can affect every organ of the body," she said. "It can cause pain crises, stroke, vision loss, acute chest syndrome, kidney disease and many other complications." Sickling occurs continuously, but certain triggers such as illness, infections, weather changes or physical stress can dramatically increase its severity and cause patients to enter crisis.  

While many patients live full lives with medication and supportive care, Tim's disease remained particularly severe. According to Dr. Arsiwala, his 11 hospital admissions in a single year placed him among the most medically complex patients in Children’s Mercy's sickle cell population. 

"We saw that his disease was very complex," Dr. Arsiwala said. "He was getting admitted for pain crises quite a lot, and that was limiting his potential and what he could do for himself and for his growth as a person." At the same time, she witnessed something equally important: Tim's readiness. She described him as responsible, accountable and increasingly independent in managing his health care. Those qualities helped make him an ideal candidate when the conversation turned to a groundbreaking new treatment option.  

A new possibility 

That conversation began in 2025. 

Tim poses with Dr. Keith August at the Hyundai Hope on Wheels event where he and other patients got to leave their handprints on a Hyundai vehicle. 

Members of Tim's care team approached him and his parents, Tasha and Tim Sr., to discuss gene therapy, a treatment designed to fundamentally transform how sickle cell disease behaves in the body. They reviewed the risks, benefits and lengthy treatment process. Tim and his family took time to learn about the therapy and ultimately decided to move forward.  

Considering this a phenomenal opportunity for their son’s future, Tasha said, "For our son to even have a chance at a regular life, it's mended the little patches of broken heart we've had throughout the years." 

Tim recalled his excitement: "I said yes, I would love to. I'd be very interested."  

For Tim, saying yes launched a journey that has been underway for nearly a year and continues today. 

Unlike traditional treatments that manage symptoms, the gene therapy Tim is receiving, called CASGEVY®, works by using a patient's own blood stem cells. Those cells are collected, sent away for specialized gene editing and then returned to the patient after chemotherapy preparation. The process increases production of fetal hemoglobin, a powerful form of hemoglobin present before birth that can help prevent red blood cells from sickling.  

The science behind the treatment is complex. The hope behind it is simple. 

"The thought is that he won't need to come into the hospital for vaso-occlusive crises anymore," said Jean Freudenthal, PharmD, Advanced Therapeutics Program Director at Children’s Mercy. "This is about improving quality of life and allowing someone to get back to normal things."  

Building a gene therapy program 

For Dr. Freudenthal, Tim's treatment represents far more than a single patient milestone. She was hired to help build Children’s Mercy's Advanced Therapeutics Program and establish the infrastructure necessary to bring cutting-edge cell and gene therapies to patients across multiple specialties. The work required years of planning, coordination and partnership across disciplines. 

"This is a huge milestone," Dr. Freudenthal said when discussing Tim becoming the hospital's first sickle cell gene therapy patient. "Tim is our first patient receiving gene therapy for sickle cell disease, and hopefully he is only the beginning."  

Preparing Tim for treatment has required a highly coordinated effort involving specialists in hematology, bone marrow transplant, nursing, pharmacy, psychology, social work, rehabilitation medicine, pain management and numerous other team members. After consenting to treatment, Tim began months of preparation that included stopping his hydroxyurea therapy, receiving red blood cell exchanges, and undergoing stem cell collection so his cells could be edited and manufactured for infusion. Tim needed only one cell collection cycle as opposed to an average of two to six cycles in clinic trials, moving Tim’s case faster than many patients experience. His cells were then sent for manufacturing before being returned to Children’s Mercy for the next phase of treatment.  

For Tim, the process has been worth it, even when it has been difficult. 

"The hardest part for me has been the blood transfusions," he said. Years of medical procedures have made finding veins increasingly difficult, often turning routine visits into hours-long appointments. Yet he has remained focused on what comes next.  

A transformative future 

The outcome physicians hope to achieve with this treatment is often described as transformative. 

At Children’s Mercy discoveries become new possibilities for patients and families.

Rather than turning off the gene responsible for sickle cell disease, the gene-editing process reactivates fetal hemoglobin production. The result is a dramatic decrease in the impact of the disease and the possibility of eliminating future pain crises and many complications associated with sickle cell disease. 

"We call it transformative therapy," Dr. Arsiwala said. "The disease burden is not there anymore because fetal hemoglobin becomes so powerful." While previous organ damage caused by sickle cell disease cannot be reversed, new complications may be prevented, and many patients experience dramatic improvements in quality of life.  

Clinical studies have produced encouraging results. Among participants ages 12 to 35 who received CASGEVY® and had sufficient follow-up, 93.5% experienced no severe vaso-occlusive crises for at least 12 consecutive months after treatment. Researchers have also reported dramatic reductions in hospitalizations related to sickle cell disease.  

Looking beyond sickle cell 

Those statistics are significant to physicians and researchers. 

For Tim, they mean something much more personal. 

He dreams about earning his CNA certification and nursing license. He hopes to help other patients living with sickle cell disease, drawing on his own experiences as someone who has spent nearly his entire life around hospitals and nurses. Maybe most importantly, he wants the chance to do ordinary things without worrying whether they will trigger a medical crisis.  

One memory stands out. 

Several years ago, Tim finally saw the ocean for the first time during a trip to Florida. Excited to experience it up close, he rolled up his pant legs and stepped into the water. The sudden temperature change triggered one of the worst pain crises of his life. 

After treatment, he hopes for a different outcome. 

"I want to go back to the ocean," he said.  

For most people, walking along a beach is an ordinary experience. For Tim, it represents something much bigger: freedom from a disease that has shaped every chapter of his life. 

As the first Children’s Mercy patient to begin gene therapy for sickle cell disease, Tim is helping open a new chapter not only for himself, but also for the patients and families who will follow. And for the first time in a long time, the future he imagines is defined less by hospital admissions and pain crises and more by possibility. 

Stop by to connect with our team, learn more about our nationally recognized pediatric programs, and discover how we’re advancing care, research and education to improve the health of children. While you're there, be sure to check out our sponsorship of the popular Puppy Play Pen, where attendees can enjoy some much-needed puppy cuddles and a fun break between sessions. We look forward to meeting pediatric providers, trainees and colleagues from across the country in San Diego.

View full details and agenda here.

There’s a special sense of community at Children’s Mercy Kansas and the College Boulevard Clinics, where children and families are cared for like neighbors.

Expert pediatric care comes with familiar faces, helping hands and meaningful moments. That blend of skill, compassion and connection makes our Kansas campus a special place to receive care and to work.

A bit about the location and services

As Kansas’ only freestanding pediatric hospital, Children’s Mercy Kansas connects families with nationally recognized services right here in their community. Employees support patients and their loved ones through the inpatient unit, 24/7 Tom Watson Emergency Department, outpatient surgery, more than 30 specialty clinics, laboratories and medical imaging services. Their knowledge and compassion help each child feel safe and supported.

That work strengthens the entire health system. By serving children with lower-acuity needs, staff expand access to timely pediatric treatment in Kansas while preserving capacity at Adele Hall for those who need the highest levels of specialized care. It’s a vital contribution that takes every role working together.

Children’s Mercy Kansas Fast Facts

• Home to 553 employees at CMK and 108 at College Blvd.
• Kansas’ only freestanding pediatric hospital.
• Home to an inpatient unit and the 24/7 Tom Watson Emergency Department.
• Offers outpatient surgery, more than 30 specialty clinics, laboratory services and medical imaging.
• Helps expand access to timely pediatric treatment while preserving capacity at Adele Hall for highly specialized care.
• Growing through a $152 million, four-year expansion that includes a new Medical Office Building, expanded programs, renovated spaces and improved access.
• Known for a close-knit, collaborative culture where employees support and celebrate one another.

That reach is set to grow through a $152 million, four-year expansion. A new Medical Office Building will bring outpatient clinics together and add an Orthopedic Rehabilitation Center, Sleep Clinic, Infusion Center and more. Renovated spaces, new clinical programs, a parking deck and accessibility improvements will support collaboration and create an even better experience for those we serve.

The Kansas culture

As the campus grows, its “Better Together” spirit remains at the heart of the work. Each day, employees bring their talents, dedication and compassion to make a meaningful difference for children, families and one another.

That connection feels a lot like a small town. When a challenge arises, colleagues walk down the hall, pull up a chair and solve it together. Strong relationships help everyone respond quickly and do what’s right for those they serve.

That support extends to everyday appreciation. Whether through a shout-out during a campus huddle or a note left on a colleague’s desk, going the extra mile is noticed. At Children’s Mercy Kansas and College Boulevard, people make the difference and celebrating them is simply part of who we are.

What others say about Children’s Mercy Kansas

• We loved all the care [team members.] They were so good with [child] and had a lot of patience while conversing with her.”
• “The physicians here have wonderful bedside manner! Polite, helpful and thorough.”
• “All the nurses were very kind and patient! Thankful for everything they did while we were there to make us feel comfortable.”
• “Everything was explained very well, and all our questions were answered.”
• “Would definitely recommend this hospital if any of my friends are in need of help for their kids.”
• “Such a clean, comfortable and well-kept location. And close.”
• “Love that they have a [facility] dog on staff.”
• “Always a warm welcome there! The volunteers are super helpful and love that the playrooms have goodies.”
• “All was taken care of. Overall great experience with all the dedicated staff and with all the love and care they rendered toward my child.”

Learn more about Children's Mercy Kansas.

The hours of operation as of Oct. 1 will be:

• Children’s Mercy Blue Valley
  • Noon – 10 p.m.
• Children’s Mercy East
  • 10 a.m. – 8 p.m.
• Children’s Mercy Northland (maintain existing hours)
  • 11 a.m. – 9 p.m.

At all locations patients can walk in for care daily or schedule their visit online with Save My Spot – childrensmercy.org/sameday.

“Our goal is to continue to increase access to care for our community,” said Allison Gardner, DNP, RN, NE-BC, CPN, Vice President, Clinical Practice Group Operations and Ambulatory ACNO. “The shift in hours is just one of the steps being made this year to optimize our urgent care services.”

Other projects that are part of the urgent care optimization working include:

• Redesign of clinical workflow.
• Increasing nurse-only services.
• Re-launching urgent care telehealth services.

Named in honor of  Girish Shirali, MD, a pioneering pediatric cardiologist and beloved mentor, the symposium continues a tradition of fostering learning, collaboration and innovation among healthcare professionals dedicated to improving outcomes for children with heart disease.

Attendees will have the opportunity to hear from leading experts from across the country, engage in discussions on emerging clinical practices and research and connect with colleagues from a variety of disciplines involved in cardiovascular care. The program is designed to provide valuable insights for physicians, advanced practice providers, nurses, trainees and other healthcare professionals who care for patients with congenital and acquired heart conditions.

In addition to a robust educational agenda, the symposium offers opportunities for networking and collaboration with peers who share a commitment to advancing pediatric cardiovascular medicine.

"We're excited to once again welcome experts from across the nation to Children's Mercy for this signature event," said the Heart Center planning team. "The symposium continues to be an important opportunity to learn from one another, share new ideas and strengthen connections that ultimately benefit the patients and families we serve."

Event Details:

Dates: October 19-20, 2026

Location: Big Slick Auditorium, CMRI

Find more information on the Children's Mercy CloudCME website.

Hotel accomodations:

Sheraton Kansas City Hotel at Crown Center (0.4 miles)
2345 McGee Street, Kansas City, MO.
Phone: (816) 841-1000

Room block is available until block is filled.

If you choose, other nearby accommodations include:

The Westin Kansas City at Crown Center (1 mile)
Hotel Phillips (2 miles) 

Transportation:

Distance from Kansas City International Airport: 22 miles

Continuing Education Credit:

This activity has been approved for:

Children’s Mercy Hospital is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians. This activity has been approved for AMA PRA Category 1 Credit™

Register today and join colleagues from across the region and beyond for one of pediatric cardiology's premier educational events. For questions, please contact Rachel Detwiler, MHA, Senior Department Administrator.

Welcome to the 9th Annual Girish Shirali Symposium on Cardiac Care. We are delighted to bring together clinicians, researchers and healthcare professionals from across the region and nation for two days of learning, collaboration and discussion focused on advancing pediatric and congenital heart care. We hope this symposium provides valuable insights, meaningful connections and inspiration to enhance care for children with heart disease.

About Dr. Girish Shirali:

Dr. Girish Shirali is a nationally recognized pediatric cardiologist, educator and researcher who has dedicated his career to advancing care for children with congenital and acquired heart disease. Throughout more than three decades in pediatric cardiology, Dr. Shirali has been widely respected for his expertise in cardiac imaging, fetal cardiology, outcomes research and innovation in pediatric cardiovascular care. He is also known as a passionate mentor whose leadership helped shape generations of clinicians, researchers and trainees. 

The Cardiac Forum, now the Girish Shirali Symposium on Cardiac Care, was created to bring together experts from across pediatric cardiology and cardiovascular surgery to share knowledge, foster collaboration and break down practice silos that can exist between institutions and disciplines. The symposium reflects Dr. Shirali's belief that better outcomes for children with heart disease are achieved when clinicians learn from one another, embrace innovation and work together across specialties. Today, the annual event continues that mission by providing a forum for education, networking and the exchange of emerging ideas and best practices in pediatric cardiac care. The symposium was later named in Dr. Shirali's honor in recognition of his visionary leadership, mentorship and lasting impact on the Heart Center and the field of pediatric cardiology.

Important Information:

Children's Mercy Research Institute Address: 2401 Gillham Rd. Kansas City, MO 64108 

Hotel: Sheraton Kansas City Hotel at Crown Center 2345 McGee St. Kasas City, MO 64108 

Phone: 816-841-1000 

Transportation: We kindly recommend using Uber, Lyft or a taxi for transportation to or from your destination. 

Forum Questions: 

Rachel Detwiler, Department Administrator (636) 295-1346, rldetwiler1@cmh.edu 

Sydney Stroud, Office Manager (785) 410-5936, slstroud@cmh.edu 

Wendy Suydam, Administrative Coordinator (816) 516-5835, wfsuydam@cmh.edu

Conference App Information:

Follow these instructions or scan the QR code to download and begin using the CloudCME app:

1. Download the CloudCME Mobile App Enter the organization code: Childrensmercy
2. Login using your conference credentials (email and password) 

You can find the conference schedule, session handouts, complete activity evaluations, view your profile, access certificates and more on the app.

Attendance Recording:

Text the activity code (4 digits) for each session to 855-966-4664. You will receive a confirmation text message when your attendance has been recorded 

First time texting attendance? Scan the QR code for instructions.

Successful Completion Requirements:

• Record attendance as directed
• Participate in educational sessions and activities
• Complete the online evaluation by November 6, 2026

Certificates and Transcripts:

Certificates and transcripts are available on all CloudCME platforms after completing activity evaluations. 

CloudCME Website > My CME > Evaluations & Certificates OR Transcript

Agenda:

Monday, Oct. 19

9:30 a.m.​ Pre-Forum Meetings and Hospital Tour (CMRI 2nd Floor Conference Rooms)​ 

12 p.m. Lunch (CMRI Garden/Outside Auditorium) 

1 p.m. Welcome and Housekeeping​ 

1:15 p.m. "Stories That Inspire: Reflections from Pulse of Purpose" Margaret Brimeyer, DNP, ARNP, CPNP-PC/AC and Megan Jensen, DNP, RN, CPNP-PC

1:35 p.m. “Impact of the Donor Sequence Number on Outcomes and Survival in Pediatric Heart Transplant Patients” Ekaanth Veerakumar, BA 

1:55 p.m. “Implementation of Physical Activity as a Vital Sign” Jessica Watson, PhD

2:15 p.m. “Translational Applications of Patient-Derived Cardiac Organoid Models” Scott Younger, PhD

2:35 p.m. Break 

2:55 p.m. “Outcomes of Heart Transplantation in Early Childhood” Edo Bedzra, MD

3:15 p.m. “From Tube to Table: A Cardiac CHAMP Approach to Feeding Progression” Sara Crawford, RN, MSN, PNP-AC and Whitney Haas, MS, RD, CSP, LD, CCTD 

3:35 p.m. “Fontan-Associated Liver Disease” Ryan Fischer, MD

3:55 p.m.
“IMProving DRug dosing and Outcomes for single VEntricle patients with Fontan Associated Liver Disease (IMPROVE FALD)” Jon Wagner, DO 

4:15 p.m. Jim & Brian Closing & Invitation to Networking Reception 

5:30 p.m. Networking Reception (Pierpont’s Union Station)

Tuesday, Oct. 20

7:30 a.m. Breakfast Buffet (CMRI Garden/Outside Auditorium) 

8:30 a.m. Jim & Brian Welcome and Housekeeping

8:45 a.m. “More Than Watching Waves. Trying to Steer the Direction of Cardiac Rhythm Care” Nicholas H. Von Bergen, MD, University of Wisconsin

9:30 a.m. “Genetics in the Management of Cardiomyopathies” Naveen L. Pereira, MD, Mayo

10:15 a.m. Break 

10:30 a.m. “Changing the Paradigm with Fetal Cardiac MR” Lorna P. Browne, MD, Children's Colorado

11:15 a.m. “Pediatric Cardiac Surgery Costs and Cost-Effectiveness. A World Atlas” Marcelo Cardarelli, MD, MPH, Johns Hopkins Children's Center 

12:00 p.m. Lunch (CMRI Garden/Outside Auditorium) 

1:00 p.m. “Beyond Breaking Bad News: Communicating Serious News with Compassion, Clarity and Connection” Terra Lafranchi, RN, MSN, NP-C, Boston Children's

1:45 p.m. “How Do We Continue to Innovate (Safely) in Congenital Heart Surgery” Sitaram M. Emani, MD, Boston Children's 

2:30 p.m. “Beyond the Angiogram: The New Era of Functional and Immersive Cardiac Imaging” Jenny E. Zablah, MD, Children's Colorado

3:15 p.m. Closing & Good Bye 

Speakers:

• Edo Bedzra, MD
• Margaret Brimeyer, APRN
• Lorna Browne
• Marcello Cardarelli
• Sara Crawford, APRN
• Sitaram (Ram) Emani
• Ryan Fischer, MD
• Whitney Haas, MS, RD, CSP, LD, CCTD
• Terra Lafranci, APRN
• Naveen Pereira
• Ekaanth Veerakumar
• Nicholas Von Bergen
• Jon Wagner, DO
• Jessica Watson, PhD
• Scott Younger, PhD
• Jenny E. Zablah Alabi

Continuing Education Credit:

This activity has been approved for:

Children’s Mercy Hospital is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians. This activity has been approved for AMA PRA Category 1 Credit™

Children's Mercy Broadway houses numerous specialty clinics as well as the Pediatric Care Clinic (PCC), which serves as a pediatric medical home for children throughout the Kansas City metro area. In addition to outpatient clinical services, families have access to on-site pharmacy, laboratory, radiology, patient financial counseling and resources through the Center for Family and Community Connection. This integrated model supports efficient care coordination and reduces barriers for families navigating complex medical needs. 

Collaboration across specialty teams is a defining feature of the Broadway campus. Providers, nurses and support staff work together to create a seamless experience from initial appointments through follow-up care, helping ensure patients receive comprehensive, coordinated treatment plans. 

The impact of this coordinated approach is reflected in feedback from patients and families, who frequently highlight the team's commitment to compassionate care, attention to detail and support throughout the care journey. Families also note the willingness of staff across disciplines to step in and provide assistance when needed, reinforcing Children's Mercy's patient- and family-centered approach. 

As referral needs continue to grow across pediatric specialties, Children's Mercy Broadway remains an important access point for comprehensive outpatient care, bringing together multidisciplinary expertise and supportive services to help children receive the right care at the right time.

A defining strength of Children’s Mercy East is its highly collaborative approach to care. Teams across specialties, diagnostic services and support functions work together to streamline the patient experience and ensure children receive timely, coordinated evaluation and treatment. Leaders at East describe a culture centered on putting patients and families first, with staff partnering across departments to support continuity of care and improve access to services. 

This team-based approach is reflected in feedback from families, who frequently highlight the professionalism, expertise and responsiveness of care teams. Families report positive experiences with clinicians who take time to understand complex concerns, collaborate on solutions and provide clear guidance throughout the care journey. They also note the supportive environment created by staff members across the facility, from clinical teams to patient-facing support personnel. 

In addition to its clinical capabilities, Children’s Mercy East was designed with long-term sustainability in mind. The LEED-rated facility incorporates energy-efficient operations and environmentally conscious design features that support the organization’s commitment to responsible stewardship while maintaining a welcoming environment for patients and families. 

Children’s Mercy East offers access to a broad range of pediatric specialty services in a convenient setting, supported by coordinated teams focused on delivering high-quality, family-centered care.

The milestone patient was a 4-year-old child diagnosed with congenital atresia of the left main coronary artery and severe aortic valve stenosis. Following a cardiac arrest during diagnostic evaluation, she required prolonged extracorporeal membrane oxygenation (ECMO) support and later transitioned to a Berlin Heart ventricular assist device while awaiting transplantation. She was listed for transplant on June 15 and successfully underwent heart transplantation on July 22. 

This case highlights the Heart Transplant Program's expertise in managing critically ill children through the full spectrum of advanced heart failure therapies, including mechanical circulatory support and transplantation. The multidisciplinary team provides comprehensive medical, surgical, rehabilitation and psychosocial support tailored to each patient's unique clinical needs. 

Since performing its first heart transplant in 2015, Children's Mercy has continued to expand its pediatric transplant capabilities. Program milestones include the first combined heart-liver transplant in 2022, the 50th heart transplant in 2023 and now the 75th heart transplant in 2026. The program has completed eight heart transplants so far this year and continues to grow with the addition of two physicians, further enhancing access to advanced transplant care for children across the region. 

The Children's Mercy Heart Transplant Program offers evaluation and management of patients with end-stage heart failure, congenital heart disease requiring transplantation, and those who may benefit from advanced heart failure therapies, including ventricular assist devices and heart transplantation. Through close collaboration with community providers, the program strives to ensure timely referral, seamless care coordination and long-term follow-up for patients and families throughout the Midwest and beyond.

As demand for pediatric sports medicine services has grown, the location has expanded both its team and clinical offerings. The center now includes Sports Medicine, Sports Physical Therapy, Orthopedic Surgery, Cardiology, Developmental and Behavioral Health, Nutrition, Psychology and other specialty services, providing coordinated care for patients with a wide range of musculoskeletal, sports-related and performance concerns. 

The Village West team emphasizes collaboration across disciplines, allowing patients and families to access comprehensive evaluation and treatment plans in one location. This integrated approach helps ensure seamless communication among providers and supports efficient, patient-centered care throughout the recovery process.

Services available at Village West include:

• Adaptive Sports Medicine
• Cardiology
• Developmental and Behavioral Health
• Movement Disorder Clinic
• Nutrition
• Orthopedic Surgery
• Sports Physical Therapy
• Sports Performance Training
• Walk-in Imaging

The center has also expanded capacity over time, including the addition of new clinics and services to meet increasing patient needs. Growth has included expansion of the Physical Therapy team and enhanced access to psychology support and advanced practice orthopedic care.

Patient and family feedback highlights the center’s commitment to clear communication, compassionate care and thorough evaluation. Families frequently praise the team’s ability to explain diagnoses and treatment plans in an understandable way while helping children and adolescents feel engaged in their own care. 

In addition to caring for community athletes, the Sports Medicine Center at Village West has provided support for elite-level athletes and teams, further demonstrating the breadth of expertise available within the program.

A recent patient at the Children's Mercy Partial Hospitalization Program (PHP) illustrates how a multidisciplinary, individualized approach can help children with complex neurobehavioral needs develop effective coping skills and achieve meaningful progress.

The patient, an elementary school-aged child diagnosed with ADHD and Disruptive Mood Dysregulation Disorder (DMDD), experienced intermittent but severe behavioral escalations that affected functioning at home and school. Despite receiving outpatient therapy, case management, medication management and educational supports, symptoms continued to escalate, ultimately leading to an emergency department visit. A referral to the PHP followed.

The child was admitted to the program's Complex Neurobehavioral Unit (CNBU), which provides specialized treatment for patients whose behaviors place themselves or others at risk. The program is designed for children who require a higher level of support than traditional outpatient services can provide. Treatment plans are individualized and delivered by a multidisciplinary team that may include psychiatrists, pediatricians, psychologists, therapists, board-certified behavior analysts and behavioral health technicians.

Upon admission, the patient demonstrated difficulty tolerating frustration, particularly during academic tasks, limited ability to wait for reinforcement or attention, and challenges with emotional regulation. The treatment team focused on reducing unsafe behaviors while building adaptive coping strategies, communication skills and replacement behaviors. Frequent behavioral monitoring and short feedback cycles helped the patient develop greater self-awareness, self-control and tolerance of frustration.

The team incorporated the patient's interests into treatment to increase engagement and motivation. Through consistent skill-building and individualized supports, the patient learned techniques such as deep breathing, self-monitoring, taking breaks and verbalizing emotions and needs. Over time, he demonstrated improved emotional regulation, greater independence and increased ability to identify triggers and evaluate his own behavior.

A key component of care was close collaboration with the patient's family. Daily review of behavioral data and ongoing caregiver involvement helped reinforce treatment strategies across settings. Prior to discharge, the PHP team coordinated with the patient's school to support a successful transition and maintain consistency in behavioral expectations and interventions.

Following discharge, the patient continued outpatient follow-up with the PHP team, transitioning from weekly to less frequent visits as progress was maintained. According to the care team, the skills developed during treatment have translated into improved functioning at home, at school and in the community. The patient's family also reported increased confidence in managing transitions and advocating for needed supports.

For providers caring for children with significant emotional and behavioral challenges, the PHP offers an option for patients who require intensive, structured intervention but do not need inpatient psychiatric hospitalization. The program aims to help patients build practical coping skills, improve emotional regulation and support long-term success across environments.

“We are both developing new techniques and adapting established ways of doing cardiac surgery to new problems to meet the unique needs of children,” said Edo Bedzra, MD, MBA, who leads the program.

Using advanced preoperative imaging, virtual reality modeling, electrophysiologic and invasive hemodynamic testing, the team has helped guide individualized care plans of multiple patients.

Notable successes include:

• The creation of novel pulmonary valves from autologous main pulmonary arterial tissue for repair of tetralogy of Fallot with absent pulmonary valve syndrome.
• Combination of Nikaidoh aortic root translocation and Senning atrial switch procedures for repair of corrected transposition of the great arteries with ventricular septal defect and pulmonary stenosis.
• Ventricular recruitment and atrioventricular valve reconstruction in pursuit of biventricular physiology in patients with single ventricle anatomy.
• Thoracoscopic division of vascular rings in infants and children.

The management of these patients across the phases of care reflects the Heart Center’s commitment to advancing treatment approaches in forward-thinking and thoughtful ways.

Along with the program’s growth, the team is building a foundation for future research, including presentations at national specialty meetings and publications that highlight how Children’s Mercy helps expand treatment options for patients who do not have straightforward surgical paths. For providers caring for children with complex heart conditions, The Innovation Program offers a way to collaborate with Children’s Mercy specialists on challenging cases and explore individualized treatment options. For referrals or questions, email InnovateHC@cmh.edu.

At Children's Mercy, that care spans a continuum that includes ECMO, specialized BPD management and one of the region's largest infant tracheostomy and home ventilator programs. The experience of 23-month-old patient Joshlynn, born at 26 weeks' gestation, who later developed severe cystic BPD, illustrates how those programs work together to support children with the most complex respiratory conditions.

ECMO Expertise for Complex Respiratory Disease

Children's Mercy recently maintained its Platinum Level Center of Excellence designation from the Extracorporeal Life Support Organization (ELSO), the organization's highest recognition for ECMO programs. Across the hospital, approximately 50 patients receive ECMO support each year, including an average of 12 to 15 neonatal patients annually.

The Division of Neonatology includes approximately 42 neonatologists, six of whom serve on the neonatal ECMO team. Working alongside ECMO colleagues across the hospital, these physicians provide specialized consultation, education, quality oversight and around-the-clock support for infants requiring ECMO.

The program has also developed experience caring for infants with severe chronic lung disease and BPD, a population many centers have historically approached cautiously when considering ECMO.

"We've been leaders in saying these children can recover and should be considered rather than excluded," said John Daniel, MD, Associate Medical Director of the NICU and Director of the Neonatal Extracorporeal Life Support Program. “ECMO is an incredibly complex support modality to provide. It is truly a team sport that involves close collaboration with our surgical colleagues. Joshlynn’s case really emphasized the great collaboration we have between our medical and surgical teams. Because of this, we can be truly innovative in our approach to ECMO support.”

That experience became critical in Joshlynn's case. As her severe cystic BPD progressed, large pneumatoceles expanded within her lungs, compressing healthy tissue and creating a situation in which surgery could not safely be performed without additional support. ECMO provided the stability needed for surgical resection of the lesions and time for recovery.

“Joshlynn’s care really reflects the teamwork and trust that goes into caring for a critically ill newborn,” said Rebecca Rentea, MD, MS, MBA, Section Chief, Colorectal and Pelvic Reconstructive Surgery. “Our surgical team worked closely with neonatology throughout her course, including when it became clear that surgical resection of the pneumatocele was needed. These are incredibly complex decisions, and having surgeons, neonatologists, and the rest of the care team working together allows us to determine the best approach for each individual child. It was very rewarding for our team to be a part of Joshlynn’s care and to see how far she has come.

For Joshlynn's family, the procedure represented a turning point in a journey that had included severe lung disease, recurrent NEC and months of uncertainty about what the future might hold.

The Children's Mercy ECMO team also takes an approach that extends beyond life support alone. When clinically appropriate, infants are supported with less sedation, allowing opportunities for physical and occupational therapy, Child Life engagement, feeding experiences and developmental activities while on ECMO. Rather than waiting until ECMO support ends to focus on growth and development, those priorities remain part of care throughout the recovery process. Joshlynn was one of the infants who benefited from that approach during her ECMO course.

Specialized Care for Severe BPD

Following ECMO and surgery, Joshlynn continued her recovery through the Children's Mercy chronic lung disease service.

Children's Mercy is a founding member of the international BPD Collaborative and participates in the collaborative's executive leadership alongside other founding institutions. Through that work, the team helps advance care for infants with severe bronchopulmonary dysplasia while collaborating with programs across the country and internationally.

Led by physicians including Karishma Rao, MD, Medical Director, Chronic Lung Diseases Inpatient Services, the program has some distinctive features.

"We don't treat a child with BPD as simply a bigger premature infant,” said Dr. Rao. “We focus on growth, neurodevelopment and the unique physiologic needs of these children."

Patient mobility, feeding progression and long-term outcomes are also important features of the program. Developmental care is integrated throughout hospitalization, recognizing that these infants have needs that extend far beyond respiratory support alone.

Joshlynn's hospitalization included recurrent NEC, feeding challenges and prolonged respiratory needs. The BPD team's multidisciplinary approach helped coordinate care across specialties while supporting her continued development during a lengthy NICU stay.

Extending Care Beyond the NICU

For many children with severe BPD, discharge marks the beginning of the next phase of care.

Through the Children's Mercy Infant Tracheostomy and Home Ventilator Program, a team of neonatologist and a neonatal nurse practitioner continue caring for many of the same children they treated in the NICU. The program follows one of the region's largest populations of infants and young children with tracheostomies and ventilator dependence, providing ventilator management, feeding support, primary care coordination and multidisciplinary follow-up.

That continuity allows families to remain connected to clinicians who have followed their child's journey from infancy through life at home.

According to Addie Begley, NP, Infant Tracheostomy and Home Ventilator Program, Joshlynn left the hospital fully dependent on ventilator support. Since discharge, she has continued progressing through ventilator weaning while achieving developmental milestones at home. She is now taking independent steps, exploring her environment and showing signs that she may be ready for additional time off the ventilator in the future.

"She's telling us she's ready," said Addie. “She is a remarkable patient with a fantastic mom who has worked tirelessly to help her get where she is today."

A Collaborative Model

Throughout her care, neonatology, ECMO, surgery, gastroenterology, respiratory therapy, developmental specialists, nursing teams and outpatient clinicians worked together to navigate one of the most complex clinical journeys imaginable.

For her mother, Brittany, the outcome remains extraordinary.

"I planned her funeral three times during this journey," Brittany said. "But Joshlynn kept proving everyone wrong."

Today, after 624 days in the hospital, Joshlynn is home with her family after being discharged in May 2026 with a tracheostomy and ventilator support. Through ongoing care with the Children's Mercy Infant Tracheostomy and Home Ventilator Program, she continues progressing through ventilator weaning while reaching developmental milestones that once seemed far out of reach. Active, curious and determined, she remains a powerful example of what can happen when advanced ECMO support, specialized BPD management and longitudinal home ventilator care are connected through a coordinated model designed for children with the most complex respiratory needs.

This year four Children’s Mercy specialties placed among the top 25 nationwide: Diabetes and Endocrinology at #14, Nephrology tied at #14 and Urology at #17.

Children’s Mercy specialties’ rankings:

·       Diabetes & Endocrinology (#14)

·       Nephrology / Kidney (#14)

·       Urology (#17)

·       Gastroenterology / GI Surgery (#22)

·       Cardiology & Heart Surgery (#26)

·       Pulmonology / Respiratory Disorders (#38)

·       Cancer (#39)

·       Orthopedics (#41)

·       Neurology & Neurosurgery (#45)

·       Behavioral Health (Top 50)

"This recognition reflects the dedication of our entire team and the trust families place in us every day," said Alejandro Quiroga, MD, MBA, President and CEO of Children's Mercy. "At Children's Mercy, we're here to make it all better for kids and families. This honor reflects what's possible when talented people come together with a shared purpose and a relentless commitment to excellence. I'm grateful to every physician, nurse, researcher and team member who brings that commitment to life every day."

The annual rankings are designed to help families identify hospitals that excel in treating children with the most complex medical needs. U.S. News surveyed nearly 150 pediatric centers, gathering clinical and operational data. This data was then combined with results from a reputational survey in which board-certified pediatric specialists were asked where they would send the sickest children in their specialty. Get additional information at childrensmercy.org/rankings.

For more than a decade, Stephanie Kukora, MD, neonatologist and Director of Scholarship in the Bioethics Center, has partnered with colleagues at St. Paul’s Hospital Millennium Medical College (SPHMMC) in Addis Ababa to help expand neonatal training opportunities and quality improvement efforts. Through collaborations with the Vermont Oxford Network and nonprofit partners, the team supported the development of a neonatal intensive care fellowship program that is helping strengthen specialized neonatal care capacity across Ethiopia. 

More recently, Anik Patel, MD, FAAP, Pediatric Emergency Medicine physician and Global Health Associate Program Director, has contributed to the development of Ethiopia’s first Pediatric Emergency Medicine-Pediatric Intensive Care (PEM-PICU) fellowship at SPHMMC. The program has already graduated its first cohort of fellows, representing a significant milestone in pediatric critical care training within the country.

The partnership also includes participation by Ethiopian physicians in Children’s Mercy’s Pediatric Bioethics Certificate Program. During a recent visit to Addis Ababa, Drs. Kukora and Patel collaborated with local physicians through educational sessions, bioethics seminars and simulation-based training. The visit provided opportunities to strengthen existing relationships, support trainees and exchange clinical expertise with colleagues working in resource-constrained environments. 

Clinicians from both institutions report that the collaboration has become a valuable source of shared learning. Ethiopian physicians bring extensive experience caring for critically ill children despite equipment and supply limitations, while Children’s Mercy faculty contribute expertise in neonatal medicine, emergency care, critical care education and bioethics. These exchanges have helped identify innovative approaches to clinical practice, quality improvement and resource stewardship. 

As the partnership continues to grow, Children’s Mercy faculty are exploring additional opportunities for multidisciplinary engagement, including expanded educational exchanges involving nursing, respiratory therapy and other clinical specialties. Ongoing collaborative work in neonatal medicine, pediatric critical care and bioethics is expected to continue through virtual teaching, trainee participation and joint scholarly activities. 

This international collaboration reflects Children’s Mercy’s commitment to advancing pediatric specialty care through education, mentorship and global partnerships while supporting the development of sustainable training programs that improve outcomes for children worldwide.

Yona experienced that continuum of care at Children’s Mercy, where he received maintenance dialysis while awaiting kidney transplantation. His clinical journey reached a milestone on his 18th birthday, when he received a deceased donor kidney transplant and began the transition from long-term dialysis to posttransplant recovery.

Yona’s course began years earlier while his family was living in Tanzania, where he developed progressive kidney failure and access to specialized renal replacement therapy was limited. His family later came to the United States to pursue ongoing nephrology care, dialysis support and transplant evaluation.

Maintaining stability while preparing for transplant

After arriving in the U.S., Yona began dialysis, first in Arizona and later in Kansas City, Missouri, at Children’s Mercy. For more than a year, his care included three-times-a-week dialysis, medication management, dietary modifications and close monitoring by a multidisciplinary team. The goal was to support his clinical stability, prepare him for transplant and address the developmental and psychosocial needs of an adolescent managing chronic kidney disease.

“That’s a lot of changes for anyone, especially a teenager,” said Bradley Warady, MD, medical director of dialysis at Children’s Mercy and Yona’s nephrologist. “Yona had to adapt to a new normal: chronic illness, regular dialysis treatments, the need to take a variety of medications and major lifestyle changes. He handled it with remarkable resilience.”

Centering quality of life in pediatric dialysis care

Throughout Yona’s dialysis experience, the care team also prioritized quality of life, an essential component of pediatric chronic disease management.

Before dialysis, Yona was an avid soccer player. As kidney failure progressed, decreased energy and treatment demands limited his ability to participate, but his connection to the sport remained strong. His dialysis team incorporated that knowledge into his care experience, arranging for visiting professional soccer players to surprise him during a clinic appointment. The moment reflected a patient-centered approach that considered Yona’s motivation, identity and quality of life alongside his medical treatment.

According to Dr. Warady, Yona’s outlook made a lasting impression on the clinicians who cared for him. “He’s got a terrific personality. He’s a terrific kid,” Dr. Warady said. “People really rallied around him because we all knew the best thing for Yona was to get off dialysis and receive a kidney.” 

Yona and his family also developed strong relationships with the nursing team, whose continuity, education and day-to-day support helped sustain him through the demands of dialysis. “We’re fans of all the nurses,” Yona said. “They’re all amazing!”

A transplant milestone and transition to recovery

In February, a deceased donor kidney became available and was determined to be an appropriate match. The transplant was scheduled for the following day, Yona’s 18th birthday, marking a clinically and personally significant transition from maintenance dialysis to posttransplant recovery.

“It was very exciting,” Yona said. “All I kept thinking was that I would finally be off the dialysis machine. I could finally do basic things again.”

Yona is now recovering and just completed his senior year of high school and is attending a local community college this fall. His progress reflects the broader goals of pediatric kidney transplantation: improving health, reducing the burden of dialysis and supporting adolescents as they move toward independence and long-term self-management.

His mother remains a central source of support, and Yona continues to look forward to milestones that once felt limited by chronic illness, including swimming, school and time with his family.

For Yona, his 18th birthday marked more than a coming-of-age milestone. It signaled the next phase of coordinated transplant care focused on recovery, long-term graft health and life beyond dialysis.

The scene may be somewhat familiar: A child with rectal bleeding undergoes a colonoscopy and you come across not one polyp, not two, but many. The immediate questions are familiar: how many should be removed? What will the histology show? When should the next colonoscopy be performed?

But when those polyps signal a hereditary polyposis syndrome, the harder questions begin days after the procedure.

Does this child need genetic testing? What does the diagnosis mean for the family? How do we come up with a long-term surveillance plan? How do repeated procedures, uncertainty about cancer risk and the prospect of lifelong surveillance affect the patient and the parents? How are they coping? And who is responsible for making sure that care does not fragment as the child moves through adolescence and eventually into adult medicine?

Changing care for children with hereditary gastrointestinal polyposis syndromes

These questions have led us at Children’s Mercy to think differently about pediatric hereditary polyposis. Endoscopic surveillance remains essential, but it is only one aspect of care. Our program brings pediatric gastroenterology and endoscopic expertise together with integrated genetics, psychology, surgery and care coordination, with the aim of managing not simply the polyps, but the inherited disorder and its consequences for the child and family over time.

A model built around the child and family

Hereditary gastrointestinal polyposis syndromes are uncommon, but their effects extend far beyond the endoscopy suite. A diagnosis may mean repeated invasive procedures beginning in childhood, uncertainty surrounding genetic findings, implications for parents and siblings, anxiety about future cancer risk and medical procedures, and ultimately, transfer to an adult health care system that must continue lifelong surveillance and may not have experience in caring for young adults with these diagnoses. Surveillance must evolve with age and be tailored to growth and development.

Decisions about genetic testing may involve both parents and children. School and social functioning, quality of life and emotional health can be affected by recurrent procedures and chronic disease. Eventually, responsibility for a complex inherited condition must shift from parent to parent and adolescent and then to the young adult.

The Children’s Mercy program is designed around these realities

Pediatric gastroenterology provides syndrome-specific surveillance and treatment; genetics clarifies diagnosis, inheritance and family implications; psychology addresses adjustments, coping and self-management to navigate lifelong disease surveillance and transition to adult care. A dedicated nurse coordinator connects these elements, helping families navigate surveillance procedures, other diagnostic tests and long-term follow-up.

The goal is to move beyond specialists working in silos and toward a coordinated program in which medical, genetic and psychosocial considerations inform one another.

Looking beyond the next colonoscopy

In polyposis care, it is easy to focus on the next procedure: identify the important lesions, remove them safely and decide when to plan the next colonoscopy or if surgery is needed. But life is measured in decades, not colonoscopies.

A child diagnosed today will require lifelong surveillance. The child’s disease expression, understanding of the diagnosis and role in medical decision-making will evolve, as will the importance of cancer risk. Genetic testing will continue to evolve, better informing our understanding of the child’s trajectory. Importantly, the transition to adult care is part of the clinical pathway, not simply an administrative event.

Learning from patients and families

Our multidisciplinary model has also been shaped by research examining the experiences of children and families living with hereditary polyposis.

Families describe burdens extending well beyond the physical effects of polyps: anxiety surrounding procedures and cancer risk, uncertainty about genetic findings and future health care needs, implications for siblings and the difficulty of explaining inherited risk to a child who may otherwise feel well. These findings reinforce why biopsychosocial care is not peripheral to polyposis management, but a central tenet of managing the disease itself.

Advancing care through research

Important questions remain about the pediatric natural history of these syndromes, optimal surveillance, endoscopic phenotype and the biological mechanisms driving polyp growth.

Our research therefore extends from clinical outcomes and endoscopic management to molecular investigation. Collaboration among Pediatric Gastroenterology, the Children’s Mercy Research Institute and the Genomic Medicine Center is creating opportunities to apply genomic and other molecular approaches to GI research specimens and link molecular findings with defined clinical behavior.

The longer-term goal is more individualized care based not only on the syndrome diagnosis, but on the patient’s unique phenotype and the biology driving their disease.

A different way forward

Finding multiple polyps may be what first brings a child to our attention, but it should not define the limits of their care. Removing polyps is essential, but so are establishing the diagnosis, understanding its implications for the family, addressing the psychosocial impact of what comes next along with preparing the adolescent for adult care. That requires more than an endoscopy program.

The colonoscopy may reveal the problem. What happens afterward is where comprehensive hereditary polyposis care begins.

The Children's Mercy 22q Center, one of the nation's largest programs of its kind, provides multidisciplinary care for nearly 500 children with 22q11.2 deletion syndrome. Recently, the team shared its latest research and clinical insights at the 2026 International 22q11.2 Scientific Conference in Crete, Greece, a biennial meeting that brings together leading clinicians and researchers from more than 20 countries to improve outcomes for individuals affected by the condition. 

Children's Mercy specialists presented four podium presentations and one poster presentation highlighting research and clinical management strategies for children with 22q11.2 deletion syndrome. Jill Arganbright, MD, received the conference's Best Session Paper Award for her presentation examining postoperative hypocalcemia following implementation of an institution-wide evidence-based clinical pathway. 

Research presented by the Children's Mercy team addressed several important aspects of care for patients with 22q11.2 deletion syndrome, including:

• Postoperative hypocalcemia and outcomes associated with an evidence-based clinical pathway.
• Immune dysregulation in chromosome 22q11.2-related disorders using data from the USIDNET Registry.
• Surgical management of velopharyngeal dysfunction using bilateral buccal myomucosal flap palatoplasty.
• Cardiopulmonary findings in adolescents with right circumflex aortic arch and 22q11.2 deletion syndrome.
• Diagnosis, management and outcomes related to branch pulmonary artery anomalies in patients with 22q11.2 deletion syndrome. 

The presentations reflect the program's commitment to integrating clinical care, quality improvement and research to inform best practices for a complex patient population. Contributions from Children's Mercy faculty and advanced practice providers help expand the evidence base and support improvements in diagnosis, treatment and long-term outcomes for children with 22q11.2 deletion syndrome worldwide. 

Through its multidisciplinary approach and ongoing research efforts, the Children's Mercy 22q Center remains a leading resource for referring providers seeking specialized care for patients with 22q11.2 deletion syndrome and related disorders.

Karli, who was diagnosed with cerebral palsy in early childhood, presented with significant lower-extremity muscle tightness, spasticity and toe walking that affected her mobility. After undergoing multiple interventions over the years, her family sought evaluation at Children's Mercy's multidisciplinary spasticity clinic, where specialists from pediatric neurology, physical medicine and rehabilitation, and pediatric neurosurgery conducted a comprehensive assessment to determine the most appropriate next steps.

The clinic's collaborative model allows specialists to evaluate patients together in a single visit, facilitating shared clinical decision-making and development of individualized treatment plans. Karli's care team included Rose Gelineau-Morel, MD, pediatric neurologist; Sathya Vadivelu, DO, pediatric rehabilitation medicine physician; and Paige Haynes, MD, pediatric neurosurgeon. 

Following multidisciplinary evaluation, the team determined Karli was an appropriate candidate for selective dorsal rhizotomy, despite being older than the typical age range for the procedure. Providers cited her motivation, maturity and ability to participate fully in the rigorous postoperative rehabilitation process as key factors supporting candidacy. SDR is a neurosurgical procedure that reduces lower-extremity spasticity by selectively sectioning sensory nerve rootlets that contribute to abnormal muscle tone. 

The procedure was performed by pediatric neurosurgery in partnership with rehabilitation medicine specialists, who provided intraoperative monitoring to help identify appropriate nerve rootlets for treatment. Following surgery, Karli transitioned directly into Children's Mercy's inpatient rehabilitation program, allowing for early initiation of intensive therapy without delays in care. 

Postoperative rehabilitation included several weeks of inpatient therapy followed by a coordinated transition to outpatient rehabilitation services closer to home. This integrated approach supports continuity of care while enabling patients and families to remain connected to local support systems during recovery. 

Karli demonstrated strong engagement throughout rehabilitation and experienced meaningful functional gains following treatment. Within months of completing inpatient rehabilitation, she was participating in recreational activities including swimming, basketball and soccer and entered high school with improved walking ability and confidence in her mobility. 

For patients with cerebral palsy and persistent lower-extremity spasticity, comprehensive evaluation by a multidisciplinary movement disorders and spasticity team can help identify candidates who may benefit from advanced interventions such as SDR. Careful patient selection, coordinated surgical care and intensive rehabilitation remain critical to achieving optimal outcomes.

Since welcoming its first patient in September 2025, the program has completed diagnostic assessments for more than 70 youth and graduated 34 patients from treatment. The PHP serves patients through two specialized tracks: the Complex Neurobehavioral Unit (CNBU) for children with autism spectrum disorder (ASD), intellectual disabilities and high-risk behaviors, and the Integrated Care Program (ICP) for patients with a broader range of behavioral and mental health needs. 

A distinguishing feature of the program is its multidisciplinary approach, bringing together psychology, psychiatry, developmental and behavioral pediatrics, nursing, behavior analysis, social work, child and family therapy, education, nutrition, child life and creative therapies to deliver comprehensive care and diagnostic clarity. Program leaders note that many patients arrive without a definitive diagnosis or a clear treatment pathway, and the PHP's coordinated evaluation process helps families access evidence-based interventions and appropriate ongoing services. 

During its first year, the team identified a significant community need among children with ASD and co-occurring challenging behaviors. In response, the program adapted its clinical model, staff training and therapeutic programming to better support this population. Today, approximately 60% of ICP referrals involve patients with ASD, and 80% have a history of challenging or externalizing behaviors. 

The program has also met key operational goals, including maintaining targeted lengths of stay and achieving low staff turnover, helping ensure continuity of care for patients and families. Treatment typically lasts six to 12 weeks, with patients placed in the most appropriate program based on clinical acuity, safety considerations and readiness for group-based interventions.

Recognizing that successful treatment extends beyond discharge, the PHP provides ongoing support through outpatient care coordination, school collaboration and weekly parent skills and support groups. These services help families maintain progress and build connections to long-term community and health care resources. 

As the program enters its second year, Children’s Mercy plans to increase capacity while continuing to address gaps in care for children with complex developmental, behavioral and mental health needs. The team is already consulting with other institutions developing similar programs, reflecting the growing recognition of this model's impact.

Hosted at the Children’s Mercy Research Institute, the event highlighted the hospital’s commitment to excellence in the areas of graduate medical education, translational research, connective tissue disorders, pediatric orthopedic surgery, radiology research, pediatric molecular oncology and cancer immunotherapy. These achievements are made possible through visionary philanthropic support. 

2026 Honorees 

• Brenda Rogers, MD 
  Dr. Sidney F. Pakula Endowed Chair in Graduate Medical Education
  
   
• Jordan Jones, DO, MS, FAAP, FACR
  Underdown Yeomans Family Endowed Professorship in Connective Tissue Disorders Care
  
   
• Kathryn Keeler, MD
  Dr. Brad and Dawn Olney Chair in Pediatric Orthopedic Surgery
  
   
• Sherwin Chan, MD, PhD
  Gallagher Family Endowed Professorship in Excellence
  
   
• Tomoo Iwakuma, MD, PhD
  Braden’s Hope for Childhood Cancer Endowed Chair in Pediatric Molecular Oncology
  
   
• Yong Li, PhD
  Paul and Linda DeBruce Endowed Chair in Cancer Immunotherapy 

From left: Honorees Dr. Jones, Dr. Rogers, Dr. Iwakuma, Dr. Keeler, Dr. Chan and Dr. Li celebrate with donors during the 2026 Investiture Ceremony.

As the hospital continues to expand its academic profile, endowed faculty positions remain central to its legacy of providing the best possible and highest quality care to all children when they need it most. 

These appointments provide talented clinicians, researchers and educators with the protected time and resources needed to lead, innovate and mentor the next generation of pediatric medicine. In an increasingly competitive academic environment, endowed positions also play a critical role in recruiting and retaining world-class talent. 

For a nonprofit teaching hospital, endowed positions are far more than a title. They are transformative investments in patients, faculty and the future of children’s health. 

“These recognize not only past achievement, but future promise, and they provide enduring support for work that advances our mission across clinical care, education, research and discovery,” said Steve Leeder, PharmD, PhD, Senior Vice President and Chief Scientific Officer.

The ceremony also recognized the generous donors whose support established and sustains these endowed appointments. Their enduring commitment helps Children's Mercy remain a leader in pediatric care, research and education for children and families across the region. 

• The Louis H. Gross Foundation, Inc. Dr. Lawrence Pakula, a Director
• Kim and Rod Underdown and the Underdown and Yeomans Family
• Dr. Brad and Dawn Olney
• The Diane and Terrence Gallagher Family
• Braden’s Hope for Childhood Cancer
• Paul and Linda DeBruce 

Learn more about the honorees and donors at childrensmercy.org.

Children's Mercy's Kidney Transplant Program provides evaluation, transplant services and long-term follow-up for children with advanced kidney disease. Care is coordinated across specialties to address each patient's medical, developmental and psychosocial needs throughout the transplant journey.

For patients like Caleb, transplantation can offer improved quality of life and freedom from dialysis, but successful outcomes depend on careful monitoring and ongoing management. The Children's Mercy team continues to partner with patients, families and referring providers to support long-term graft health and overall well-being.

This story highlights the impact of early specialty care, coordinated transplant services and longitudinal follow-up in helping pediatric patients with complex kidney disease achieve the best possible outcomes.

Led by Brooke Fridley, PhD, the BCB Core supports projects from initial concept through publication. The team assists with study design, hypothesis development, sample size estimation, statistical analysis, data visualization and dissemination of findings. By partnering with researchers throughout the research process, the BCB Core enables investigators to focus on clinical questions while leveraging advanced analytical expertise. 

The team also supports increasingly complex research initiatives involving large datasets, genomics and computational biology. In collaboration with the Research Informatics and Data Science team, BCB develops tools that help researchers better analyze and visualize study data, identify patterns and generate new hypotheses. These capabilities are particularly important as pediatric research continues to become more data intensive. 

In addition to project support, the BCB Core invests in workforce development through training programs, workshops and educational opportunities for investigators, fellows and junior faculty. Looking ahead, the team plans to expand its bioinformatics services, including support for whole genome sequencing and single-cell genomics, helping meet the growing analytical needs of translational pediatric research. 

Together, these efforts strengthen Children's Mercy's ability to translate research discoveries into innovations that improve the health and well-being of children.

During her stay on the Liver and Renal Unit, Jenna formed a connection with Liv Golden, BSN, RN, who was serving as a nurse technician at the time and is now a registered nurse on the same unit. Through clear communication, emotional support and thoughtful efforts to help normalize the hospital experience, Liv helped Jenna and her family navigate an understandably stressful period. 

Jenna’s family described how Liv took time to explain procedures in age-appropriate ways, engage Jenna in conversations about shared interests and support not only the patient, but also her parents. Small acts of compassion, from helping make a hospitalization feel less intimidating to checking on caregivers’ well-being, left a lasting impression. 

Nearly a year after Jenna’s hospitalization and recovery, her family surprised Liv during her nursing pinning ceremony at Pittsburg State University to thank her for the care she provided. The moment highlighted the enduring relationships that can develop when clinical excellence is paired with empathy and family-centered support. 

At Children’s Mercy, multidisciplinary teams recognize that outcomes extend beyond diagnosis and treatment alone. Meaningful communication, caregiver support and compassionate nursing care are critical components of the patient and family experience, helping children and families feel seen, supported and empowered throughout their care journey.