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.

For 40 years, NKF’s Camp Chimer has given children with kidney disease something every child deserves: the chance to enjoy summer camp safely, build friendships and feel understood. With medical support from Children's Mercy, campers ages 9 to 18 who are on dialysis or have received a kidney transplant can take part in activities like swimming, laser tag, crafts, a dance and team-building while receiving the care they need.

This year, Camp Chimer marked its 40th anniversary July 31-Aug. 2, at a camp and retreat center in Kansas City. The anniversary celebrations included special activities recognizing the camp's history, alumni, volunteers, donors and the families whose lives have been touched by the program. 

“I can swim now since I have had my transplant. However, my first summer at camp I was on dialysis and couldn’t swim at home because it can cause complications. At camp, I was able to swim and just have a good time.” — Second-year camper

"It can be nerve-wracking sending your child to away camp, especially a child with kidney disease. However, the team at Camp Chimer not only makes sure he’s having fun, but staying healthy too.” — Camper’s mom

"As I celebrate my first summer at Camp Chimer, I am inspired by the joy, resilience and courage of these incredible campers and their families,” said Dr. Marc Hurlbert, CEO of the National Kidney Foundation. “Forty years of Camp Chimer represents four decades of changing lives, creating lifelong memories, and reminding children with kidney disease that they are never alone. We are proud to honor Dr. Warady and everyone who has helped make this extraordinary legacy possible and look forward to building on it for generations to come."

Founded in 1986 by Brad Warady, MD, Director of Dialysis and the McLaughlin Family Endowed Chair in Nephrology, the camp was created so children in kidney failure, on dialysis or post kidney transplant could experience the joy and independence of summer camp. A team of staff from Children’s Mercy including physicians, nurses, APPs, child life, social work, pharmacy, language services and a host of volunteers are there to meet the needs of the kids and to make it the best possible experience for those that attend. Camp Chimer is offered at no cost to participating families thanks to the generosity of donors, sponsors and volunteers who make this life-changing experience possible.

Learn more at Kidney.org/CampChimer.

Programs like Kindness Camp reflect Children's Mercy's commitment to comprehensive, family-centered care that addresses not only a child's medical needs but also their social and emotional health. By creating opportunities for patients to connect with peers, participate in meaningful activities and simply be kids, the program helps support resilience and comfort during hospitalization. The annual event highlights the collaborative efforts of multidisciplinary teams dedicated to improving the patient and family experience throughout the care journey.

Throughout his care, Connor developed strong relationships with the clinical teams who supported him through treatment, hospitalizations and recovery. While his medical journey included radiation therapy and ongoing oncology care, Connor credits the compassion and dedication of Children's Mercy nurses and care teams as some of the most meaningful aspects of his experience. 

Connor's story also underscores the value of integrated supportive services. Working with Children's Mercy Art Therapist Katie Brewer, MS, LPC, ATR-BC, he transformed a radiation treatment mask into a Spider-Man-inspired work of art using his own 3D printing skills. The project provided an opportunity for creative expression, helping him process his experiences while reinforcing identity, resilience and self-efficacy beyond his cancer diagnosis.

Art therapy is one of many supportive care resources available to patients at Children's Mercy. These services can help children and adolescents navigate the emotional and psychosocial challenges of serious illness, reduce anxiety and foster coping strategies throughout treatment. Connor's experience demonstrates how comprehensive pediatric cancer care extends beyond treating disease to supporting the whole child and helping patients thrive throughout their health care journey and beyond. 

As he moves into adult care, Connor continues to embody the resilience that has defined his journey, offering encouragement to other patients facing health challenges: “Never, never give up. Always believe in yourself.”

As one of only a few dedicated colorectal and pelvic reconstruction centers in the nation, the Children’s Mercy Comprehensive Colorectal Center provides multidisciplinary care for children with complex colorectal, pelvic and urogenital conditions. During the conference, Dr. Rentea participated in educational sessions on Hirschsprung disease, telemedicine and long-term care management, while also engaging with families through panel discussions and small-group conversations. Children’s Mercy’s sponsorship and participation reinforced its commitment to supporting patients and families beyond the clinical setting, helping connect them with resources, expert guidance and a broader community of support.

In welcoming attendees, symposium leader David Sutcliffe, MD, emphasized the value of bringing together a diverse group of transplant specialists to share knowledge, spark new ideas and strengthen partnerships that ultimately benefit transplant patients and families. 

The symposium featured a robust educational agenda focused on the evolving landscape of transplantation and the importance of multidisciplinary collaboration. Steven Webber, MBChB, MRCP, delivered the keynote presentation before joining a distinguished lineup of experts from Children’s Mercy and beyond.

A highlight of the morning was the opening plenary session, How Did We Get Here, Where Will We Go?, featuring David Sutcliffe, MD, Will Gibson, MD, Ryan Fischer, MD, Amy Gallo, MD, and Judith VanSickle, MD. The discussion explored the progress made in transplantation and opportunities for future innovation and growth. 

Attendees also participated in a multidisciplinary panel discussion, Navigating Life After Transplant: Building Seamless Transitions Together, which brought together nurses, social workers, physicians and a transplant patient to discuss the critical role of coordinated care as patients transition from pediatric to adult services. The session highlighted the value of teamwork and partnership in supporting patients throughout their transplant journey. Additional presentations examined the broader needs of transplant patients and families, including palliative care involvement in solid organ transplantation, the psychological effects of transplantation and approaches to goals-of-care conversations and symptom management.

The afternoon focused on organ donation and the powerful stories that inspire the transplant community. Lori Markham presented The Changing Landscapes of Donation, while Danica Stewart shared The Family Perspective of Organ Donation and Transplantation, offering attendees a deeper understanding of the lasting impact donation has on patients, families and care teams. 

The inaugural symposium concluded with a social gathering that allowed attendees to continue conversations, build new professional relationships and strengthen existing collaborations. The Brendan Tripp Elam Transplant Center team hopes the connections made and ideas shared during the event will continue to advance transplant care and improve outcomes for patients and families across the region. 

"Being a part of the inaugural Transplant Symposium was an honor! We have been planning for this for more than two years and to see it come to fruition was great. We were able to reach multiple organ teams and multidisciplinary staff throughout the hospital. In the future, I think we would love to expand our regional reach and hope to continue to grow the symposium bigger and better each year. I am so proud of the work we did and am honored to be on the planning committee " said Katelyn Walser, RN, BSN, CPN, CCTC.

As the Brendan Tripp Elam Transplant Center and Midwest Transplant Network look ahead, the success of the inaugural event demonstrated the value of bringing together experts from across disciplines to share knowledge, learn from one another and further a shared commitment to the transplant community.

The da Vinci surgical platform provides enhanced visualization, dexterity and control, enabling complex reconstructive procedures to be performed through smaller incisions. For patients, this can mean less postoperative pain, shorter hospital stays and a faster recovery. Most patients treated through the new program have returned home within 24 hours of surgery. 

Children’s Mercy recruited Gino Vricella, MD in 2023 to help establish the robotics program. With experience performing more than 264 robotic procedures, Dr. Vricella is among the nation’s leading pediatric robotic surgeons. The addition of robotic-assisted surgery allows families across the region to access advanced pediatric surgical expertise closer to home, eliminating the need to travel to distant centers for specialized care. 

The robotics initiative is the result of extensive multidisciplinary collaboration among surgical, nursing, operational, IT and clinical teams, all focused on delivering safe, high-quality care. The program has already completed multiple robotic-assisted procedures and plans are underway to expand robotic capabilities to additional specialties, including colorectal, transplant and general surgery. A second robotic system is expected to be added at the Adele Hall Campus, further increasing access to advanced minimally invasive surgical care.

As Children’s Mercy continues to grow its robotic surgery program, referring providers can feel confident that patients have access to innovative surgical options designed specifically for children, backed by an experienced multidisciplinary team and a commitment to improving outcomes and the patient experience.

Now 2 years old, Lilly has successfully undergone the first two stages of surgical palliation for HLHS and continues to receive ongoing care through a close partnership between Children’s Mercy Kansas City and Children’s Mercy Wichita. Her care team includes pediatric cardiologist Rabah Daoud, MD, who provides longitudinal cardiology follow-up in Wichita, allowing much of her routine cardiac monitoring and advanced imaging to occur closer to home. 

The expansion of Children’s Mercy Wichita is helping improve access for regional families managing complex pediatric conditions. With enhanced specialty services, advanced cardiac imaging capabilities and coordinated care pathways, patients like Lilly can receive comprehensive follow-up care locally while still benefiting from the expertise and resources of the Ward Family Heart Center in Kansas City. 

“Lilly has successfully completed the first two stages of her surgical repair and is now awaiting her third,” Dr. Daoud said. “Thanks to the comprehensive cardiac imaging and specialized care now available here in Wichita, she has been able to receive the advanced testing and close follow-up she needs much closer to home.” The ability to identify concerns early, provide timely intervention and reduce the burden of travel has helped support Lilly’s progress and quality of life. 

Lilly’s journey highlights the value of integrated pediatric specialty care, demonstrating how collaboration between regional and tertiary care teams can improve access, continuity and outcomes for children with congenital heart disease throughout the region.

Children’s Mercy has served the Wichita region since 2012, providing specialty care for children across a broad geographic area. The new clinic features 30 exam rooms, on-site laboratory and imaging services, and 16 specialty clinicians representing 11 pediatric specialties. The facility is expected to support more than 16,000 patient visits annually. 

“For more than a decade, Children’s Mercy has been honored to partner with Wichita families and providers to deliver expert pediatric specialty care close to home,” said Amy Fallon, MPH, PhD, President of Regional Operations. The new clinic reflects Children’s Mercy’s ongoing commitment to expanding access to high-quality pediatric care throughout the region. 

The facility was intentionally designed to support both patient experience and clinical collaboration. By colocating multiple specialties and support services, the clinic streamlines care coordination and referral pathways while reducing travel and appointment burden for families. On-site diagnostic capabilities further enhance efficiency for patients requiring multidisciplinary evaluation and treatment. 

The opening represents a collaborative effort among clinical, operational and project teams across the Children’s Mercy system. Local leaders emphasized the importance of developing a space that supports coordinated care delivery while meeting the needs of the Wichita community.

As part of Children’s Mercy’s regional care network, the Wichita clinic strengthens access to pediatric specialty expertise while maintaining close connections to subspecialty resources throughout the Children’s Mercy system. The expansion reinforces the organization’s commitment to partnering with referring providers to deliver comprehensive, compassionate care for children across Kansas and the surrounding region. 

Through its Pediatric Medical Specialty Team (PMST), Children's Mercy partnered with the Missouri Disaster Medical Assistance Team (MO DMAT-1), the Missouri Behavioral Health Strike Team and other regional agencies to provide pediatric expertise during one of the largest planned public events in the region's history. The collaboration was coordinated through the Missouri State Emergency Management Agency and supported operational planning for local healthcare systems, emergency responders and event venues. 

Children's Mercy clinicians and emergency preparedness professionals provided pediatric subject matter expertise, operational medical support and consultation to help ensure the needs of children were integrated into emergency response plans. The deployment also strengthened coordination among healthcare organizations, including the Kansas City Fire Department, The University of Kansas Health System and other regional partners involved in event operations.

The effort required multidisciplinary collaboration across Children's Mercy, including Emergency Management and Business Continuity, Critical Care Transport, the Emergency Department, Pharmacy, Supply Chain, Information Technology, Communications, Marketing and Philanthropy. Teams coordinated staffing, equipment, supplies and technology to support field operations throughout the event.

Children's Mercy also partnered with the Pediatric Pandemic Network to provide pediatric-focused resources, including communication tools and comfort kits designed to support children during emergencies and high-stress situations.

According to Jennifer Watts, MD, MPH, the deployment reflected Children's Mercy's commitment to extending pediatric expertise beyond the hospital setting and supporting regional healthcare capacity. By helping provide care and consultation in the field, the team contributed to reducing potential strain on emergency departments and healthcare systems while supporting a major public event.

The initiative highlights the critical role of pediatric specialists in disaster preparedness and large-scale event planning, as well as the importance of collaboration among healthcare, emergency management and public safety partners to ensure comprehensive care for children and families during community-wide events.

• Rita France presented and Dan Forsha chaired and presented the hands-on Pediatric Strain Learning Lab.
• Rita France organized the Society of Pediatric Echo [SOPE] networking event.
• Dan Forsha was a panelist interviewer of Meryl Cohen during the Pediatric Echo Trailblazers session
• Dan Forsha judged the Brian Haluska Sonographer Research Award competition.
• Melanie Kathol received FASE recognition and managed the CMKC Heart Center Cardiac Imaging Core Lab Booth throughout the conference.

  Abstracts:  

• Diagnosis Associated Defects and Management of 10-year Follow-Up of Anomalous Left Circumflex Coronary Artery from the Right Pulmonary Artery
  • Authors – Abhijikumar Jayasckat, Chris Mathis, William Gibson, Lauren Littell, Jenna Schermerhorn, Kayla Sayre, Sanket Shah
• A case series of prenatal diagnosis of right aortic arch, right ductus arteriosus and significant congenital heart disease
  • Authors – Jenna Schermerhorn, Hayley Hancock, Nitin Madan, Anmol Goyal, Kelsey Brattrud, Sanket Shah, Maria Kiaffas
• Expect the Unexpected: Three-Dimensional Transesophageal Echocardiography Shows Double Orifice Left Atrioventricular Valve in Unbalanced Right Dominant Atrioventricular Septal Defect
  • Authors – Pezad Doctor, Mohamed Aasshiq Abdul Ghayum, Katie Moore, Tyler Johnson, Anmol Goyal, Sanket Shah
• Coronary Artery Fistula, Ventricular Septal Defect and Vascular Ring; Prenatal Diagnosis, Postnatal Course, and Percutaneous Fistula Closure
  • Authors – Lauren Littell, Toby Rockefeller, Maria Kiaffas, Nitin Madan, Doa Aly, Sanket Shah
• Triple orifice right and double orifice left atrioventricular valve in a patient with atypical atrioventricular septal defect variant.. Poster presented at: American Society of Echocardiography (ASE) Echo Expo; 2026.
  • Authors – Adenike Adenikinju, Mariano Gonzalez Coral, Lauren Littell, Sanket Shah, Edo Bedzra, Anmol Goyal
• Continuous Quality Improvement in Pediatric Echocardiography: A Multi-Year Journey of Measurable Impact”
  • Authors – Ashley Warta, Laura Kuzava and Rita France 

By presenting innovative research, leading educational sessions and sharing best practices, the Ward Family Heart Center team demonstrated the collaborative approach that drives excellence in patient care, education and discovery. Their contributions at ASE 2026 further reinforced Children’s Mercy’s reputation as a leader in pediatric cardiac imaging and congenital heart disease care.

Born prematurely at 28 weeks with Down syndrome, Cate required early NICU support at Children’s Mercy and experienced ongoing medical and social instability, including re-hospitalizations and time in foster care.

Just before her first birthday, she was diagnosed with myeloid leukemia associated with Down syndrome (ML-DS)—a rare but highly treatable subtype of leukemia. Her care involved multiple cycles of inpatient chemotherapy over approximately six months, with close monitoring, nutritional support and frequent readmissions between treatments. 

While ML-DS carries a favorable prognosis—with reported five-year survival rates around 85%—Cate’s course underscored the importance of vigilant management and multidisciplinary care, particularly in children with underlying genetic conditions and complex social needs.

Shortly after completing chemotherapy, Cate developed severe sepsis, requiring escalation to the PICU with ventilatory support and dialysis due to acute renal failure. She experienced additional complications, including vascular compromise that resulted in partial foot amputation. Despite these challenges, Cate demonstrated remarkable resilience, ultimately recovering renal function and discontinuing dialysis.

Her recovery reflects the strength of an integrated care model, including:

• Timely escalation to critical care
• Close collaboration across oncology, intensive care, nephrology and rehabilitation teams
• Ongoing support from care management, social work and family-centered services

Equally important was the role of consistent, engaged caregivers. Cate’s foster family—Joel Koenig, MD, pediatric urologist at Children’s Mercy, and his wife Karen who later adopted her—worked in close partnership with her care team, helping provide continuity and advocacy throughout prolonged hospitalizations and recovery. 

Now cancer-free and thriving at age 9, Cate continues to receive specialty follow-up care to support her long-term health and development. 

Her journey also speaks to the lasting impact these experiences can have on providers. Her adoptive father, a Children’s Mercy pediatric urologist, now integrates his perspective as a parent into his leadership in care management and patient-family services—reinforcing the importance of whole-child, whole-family care.

Cate’s case is a powerful reminder that optimal outcomes in medically complex pediatric patients depend not only on clinical expertise, but on coordinated systems of care and strong partnerships with families at every step.

Children’s Mercy provides comprehensive, longitudinal care for children with complex congenital heart disease—supporting patients and families from prenatal diagnosis through childhood and beyond. One patient’s journey highlights how coordinated subspecialty care, remote monitoring, and expanded regional services can significantly reduce the burden on families while maintaining the highest level of clinical oversight.

Diagnosed prenatally with a complex congenital heart defect, this patient received care through the Elizabeth J. Ferrell Fetal Health Center, followed by neonatal intensive care and multiple cardiac interventions, including open-heart surgeries, valve replacements and pacemaker procedures. Throughout her course, multidisciplinary teams at Children’s Mercy closely coordinated inpatient, outpatient and home-based monitoring.

Participation in the Cardiac High Acuity Monitoring Program (CHAMP) enabled daily transmission of cardiac and physiologic data from home, allowing early identification of clinical changes and reducing the need for frequent long-distance travel. As Children’s Mercy expanded specialty cardiac services in Wichita, the family was able to transition many follow-up visits and monitoring appointments closer to home—minimizing missed work and school while maintaining continuity with their established care teams.

Today, the patient continues to receive ongoing cardiology care, with improved cardiac function following medical therapy and device interventions. Access to Children’s Mercy subspecialists both in Kansas City and regionally has supported timely interventions, close surveillance and a quality of life that allows participation in school and activities.

Children’s Mercy has a commitment to partnering with community clinicians—offering advanced pediatric subspecialty expertise, remote monitoring programs, and regional clinics designed to keep care close to home whenever possible while preserving seamless coordination across the system.

Children’s Mercy continues to advance comprehensive, patient-centered pediatric kidney transplant care through a highly experienced multidisciplinary team. Two transplant coordinators within the Kidney Transplant Program, Katelyn and Mariah —both former pediatric kidney transplant recipients—now bring unique clinical insight to the care of children and adolescents with complex kidney disease, further strengthening the program’s continuity and family-centered approach.

As transplant coordinators, these nurses play a central role in guiding patients and families through evaluation, transplant preparation, post-transplant monitoring, and long-term follow-up. Their responsibilities include coordinating diagnostic testing, managing laboratory surveillance, facilitating medication adjustments, and serving as a consistent point of contact between referring providers, transplant surgeons, nephrologists, and families.

Their work alongside Bradley Warady, MD, and the broader Children’s Mercy Nephrology and Transplant teams underscores the program’s longstanding leadership in pediatric kidney care. The Kidney Transplant Program has supported generations of patients through advanced medical management, successful transplantation, and transition to adulthood, emphasizing coordinated care across pediatric and adult systems.

This integrated model ensures seamless collaboration, timely communication, and comprehensive support for children with kidney failure—from initial referral through transplant and long-term outcomes. The presence of highly experienced transplant coordinators with deep clinical and personal understanding of kidney disease reinforces Children’s Mercy’s commitment to delivering expert, compassionate, and reliable specialty care.

Treating Genetic Conditions Before Birth

At Children’s Mercy in Kansas City, our teams are advancing care for certain genetic conditions by beginning treatment before a baby is born. This approach, known as in utero treatment, aims to support a child’s health as early as possible.

This year, the Elizabeth J. Ferrell Fetal Health Center cared for a baby diagnosed before birth with spinal muscular atrophy (SMA) Type 1, a genetic condition that causes muscle weakness beginning in infancy. Without treatment, children with SMA Type 1 may have difficulty sitting, walking or breathing on their own.

During pregnancy, the mother was treated with Risdiplam, a medication that helps improve muscle function. By starting treatment before birth, the care team was able to influence the baby’s early development. At delivery, the baby showed strong movement and a vigorous cry.

The team is also currently caring for a pregnancy affected by cystic fibrosis. During pregnancy, the mother is being treated with Trikafta, a medication that helps the body move salt and water more effectively. Early treatment may help reduce thick mucus buildup and support lung and digestive health from the start of life.

These early interventions represent continued progress in fetal care and reflect Children’s Mercy’s commitment to advancing treatment options and improving outcomes for families.

Prenatal Genetics Evaluation and Testing at the Fetal Health Center

Families may benefit from a prenatal genetics evaluation during pregnancy or while planning for pregnancy. Reasons why include a personal or family history of a genetic condition, having a child previously affected by a genetic disorder, higher‑risk results on prenatal screening, learning that both parents are carriers for the same condition or unexpected findings on ultrasound.

At Children’s Mercy’s Fetal Health Center, Lylach Haizler‑Cohen, MD, provides care for patients with complex prenatal needs. She is specially trained in both maternal‑fetal medicine and clinical genetics, allowing her to care for both mother and baby while helping families understand genetic information and testing options.

Services include detailed ultrasound evaluations, genetic risk assessment and counseling and diagnostic testing. Available procedures include chorionic villus sampling (CVS) and amniocentesis.

CVS is typically performed between 10 and 13 weeks of pregnancy and involves collecting a small sample of placental tissue. Because it is done earlier in pregnancy, CVS can provide genetic information sooner. Amniocentesis is usually performed after 15 weeks and involves collecting a small amount of amniotic fluid using a thin needle guided by ultrasound. Both tests provide important information to help families understand their baby’s health and make informed decisions.

For Professionals

Few maternal‑fetal medicine practices currently offer CVS. This early diagnostic test can be valuable in several situations, including higher‑risk noninvasive prenatal testing results, a prior child affected by a genetic condition or congenital anomalies identified on early ultrasound.

If you have a patient who may benefit from CVS, the best way to refer is to fax a referral to the Fetal Health Center at (816)302-9605. For urgent consults, providers may also call (816)855-1800 to confirm the fax was received.

Children’s Mercy performs both transabdominal and transcervical CVS. The evaluation includes genetic counseling by a certified genetic counselor, a detailed ultrasound assessment, the diagnostic procedure and follow-up ultrasounds as needed.

Today, Wyatt is a thriving, energetic child with the stamina to enjoy daily activities that once felt out of reach. His clinical course, however, reflects the complexity and long‑term management often required for children diagnosed with severe congenital urinary tract obstruction.

Wyatt’s care at Children’s Mercy began prenatally. At a routine 20‑week ultrasound, he was diagnosed with marked dilation of the kidneys, ureters and bladder, raising significant concerns for obstructive uropathy and postnatal renal function. He was referred to the Elizabeth J. Ferrell Fetal Health Center, where specialists in Fetal Health, Neonatology and Pediatric Nephrology collaborated closely for the remainder of the pregnancy.

For more than four months, the team provided coordinated counseling, anticipatory guidance and care planning, helping the family understand potential outcomes and prepare for postnatal interventions. Wyatt was delivered at 37 weeks and diagnosed with posterior urethral valves (PUV), a rare cause of bladder outlet obstruction in male infants.

He underwent surgical intervention within days of birth, followed by years of intensive medical management. Despite ongoing nephrology care, multiple hospitalizations and daily medications, his renal disease progressed. Ultimately, he developed end‑stage kidney disease requiring transplantation.

After 607 days on the transplant waitlist — during which several potential living donor options were explored but did not proceed — Wyatt received a directed deceased‑donor kidney transplant from a young donor in his community. The donation, made possible through the generosity of the donor’s family during their own loss, proved life‑changing.

In November 2025, Wyatt underwent kidney transplantation at The Brendan Tripp Elam Transplant Center at Children’s Mercy. Despite the surgical complexity, his postoperative course was smooth, allowing discharge within one week. The clinical improvements were rapid and sustained: increased energy, improved appetite, developmental gains and the ability to participate fully in age‑appropriate activities.

Today, Wyatt continues to do well, with stable graft function and a markedly improved quality of life. For his family, Children’s Mercy represents not only advanced clinical expertise, but also continuity, collaboration and compassion throughout every stage of care.

Wyatt’s case underscores the importance of early fetal diagnosis, multidisciplinary management and timely access to pediatric transplant services — and the profound difference this care can make for children with complex renal disease and their families.

Nine years after kidney transplantation, Morea—a 15‑year‑old with congenital nephrotic syndrome—continues to demonstrate excellent long‑term outcomes and quality of life. Now an active, multi‑style dancer (ballet, tap, jazz, lyrical and hip hop), she balances school, competition season and extracurriculars while maintaining strong adherence to her post‑transplant care regimen.

Morea was diagnosed at 7 weeks of age after a viral illness prompted evaluation for poor weight gain and proteinuria. Further workup at Children’s Mercy, including kidney biopsy and genetic testing, confirmed congenital nephrotic syndrome due to a rare genetic variant.

“When babies are born with congenital nephrotic syndrome, the kidneys lose protein in the urine, leading to complications such as hypoalbuminemia, edema, increased infection risk and progressive loss of kidney function,” said Heather Morgans, DO, pediatric nephrologist in the Brendan Tripp Elam Transplant Center at Children’s Mercy.

Initially, her condition was managed medically by the nephrology and transplant teams. As renal function declined, she developed nausea and poor appetite, necessitating gastrostomy tube placement. By 5½ years of age, Morea progressed to stage 5 chronic kidney disease and initiated home peritoneal dialysis while awaiting transplantation.

“Peritoneal dialysis uses the capillaries of the peritoneum to filter waste products and excess fluid overnight,” Dr. Morgans explained. “Dextrose‑based dialysate facilitates diffusion and ultrafiltration during cycling.”

Despite intensive support, dialysis significantly impacted Morea’s daily functioning and energy level, limiting school attendance and extracurricular activities. During this period, she was placed on the active kidney transplant list, with evaluation for both living and deceased donors. Although no compatible living donors were identified, close monitoring continued.

As her disease progressed, hypertension became increasingly difficult to control.

“In advanced kidney failure, dysregulation of the renin‑angiotensin‑aldosterone system can significantly contribute to hypertension,” said Dr. Morgans.

To address blood pressure control and optimize space for a future graft, Morea underwent bilateral nephrectomy prior to transplantation. She required prolonged peritoneal dialysis post‑operatively until discharge.

In September 2017, at age 6, Morea received a deceased donor kidney transplant. Her surgical course and post‑operative recovery were uncomplicated. She transitioned successfully to immunosuppressive therapy, with routine laboratory monitoring and surveillance that tapered over time as graft function stabilized.

Post‑transplant, Morea experienced marked improvements in appetite, energy and growth. Growth hormone therapy supported catch‑up growth during childhood. She now follows an unrestricted diet, remains well hydrated and attends kidney clinic just four times per year.

“She has had an excellent post‑transplant course,” said Dr. Morgans. “Her success reflects strong adherence—consistent hydration, medication compliance and engagement in her care.”

Transplant coordinator Katelyn Walser, RN, BSN, CPN, CCTC, has worked with Morea since 2019 and notes that she has steadily assumed greater responsibility for managing her health. As she approaches adolescence, clinic visits focus not only on labs and medication management but also on preparing for eventual transition to adult care.

Morea’s graft function remains strong nearly nine years post‑transplant. While future retransplantation is anticipated—as the average kidney graft lifespan is 10 to 20 years—ongoing advances in immunosuppression may extend longevity.

Beyond her clinical milestones, Morea leads a full, typical teenage life. She remains active in dance, is preparing for driving independence and is exploring a potential future career in health care—motivated, in part, by her own medical journey.

Her case highlights the impact of coordinated, longitudinal pediatric nephrology and transplant care—from early diagnosis through adolescence—and the potential for sustained graft success paired with meaningful quality of life.

The statement, “Update on Education for Families and Patients With Pediatric Heart Disease: A Focus on Technological Advancements, Procedures, and Transitions of Care,” was developed by nursing leaders and multidisciplinary complex care teams with extensive experience supporting children with congenital and acquired heart disease and their families. It synthesizes over a decade of emerging evidence on best practices for patient and family education across the care continuum, including procedural preparation, interstage monitoring, transitions of care, and the expanding role of digital health technologies.

The statement emphasizes a family-centered, trauma-informed approach to education and communication, underscoring the need to align clinical information with patient and caregiver understanding at each stage of care. It also highlights the critical role of interdisciplinary collaboration among cardiologists, nurses, psychologists, child life specialists, therapists, and social workers in supporting outcomes and long-term adjustment.

“Dr. Gross-Toalson and I have long shared a clinical focus on family-centered and trauma-informed care,” said Dr. Erickson, who chaired the writing group. “As we developed this updated statement, it was essential that these principles be explicitly incorporated into the evidence base.”

The original AHA statement on this topic was published in 2003. Work on the update began in early 2024. Following extensive peer review, the statement was approved through the AHA scientific review process in October 2025 and published online in March 2026.

Significance for Clinical Practice

AHA Scientific Statements are widely cited in peer-reviewed literature and are frequently used to inform clinical guidelines, grant applications, and health policy. They serve as expert consensus documents reflecting the current state of cardiovascular evidence.

“This paper provides a structured, evidence-based framework to guide cardiology providers in integrating education and well-being into clinical practice,” said Dr. Gross-Toalson. “Because cardiology appropriately emphasizes evidence-based care while tailoring decisions to individual patients, it was critical to apply that same rigor to education, communication, and family support.”

She added that families consistently identify communication with the care team as a key determinant of psychosocial adjustment. Standardizing and simplifying educational approaches—while remaining responsive to individual learning needs—may support improved long-term outcomes.

Notably, the authors extend beyond traditional educational recommendations, addressing how cognitive, emotional, developmental, and social factors influence how patients and families receive, process, and apply clinical information.

Additional perspective from Dr. Erickson is available in an accompanying AHA Science YouTube video.

Nicholas’ progress reflects a combination of intrinsic motivation, family advocacy, and long-term multidisciplinary care. “He’s never been comfortable accepting ‘no’ as a final answer,” said his father, Cameron. “We’ve always approached challenges with the question: How can this work? — and Nicholas has embraced that mindset.”

Early diagnosis and coordinated care

Cerebral palsy presents across a broad clinical spectrum, with variable impacts on movement, posture and function. Nicholas’ early symptoms were relatively mild, including lower‑extremity stiffness and limited spontaneous movement in infancy. He was evaluated and diagnosed by a Children’s Mercy team and connected early to speech, occupational and physical therapy services.

He also established care with the Children’s Mercy Orthopedic Clinic, where he has been followed longitudinally for gait, growth and functional mobility.

Kathryn Keeler, MD, Department Chair of Orthopedic Surgery, has served as Nicholas’ orthopedic surgeon since he was 6 years old. At that time, he primarily relied on a wheelchair and reverse walker for mobility.

“Nick has exceptional mental toughness,” said Dr. Keeler. “He underwent multiple orthopedic procedures to address hip, leg and foot alignment with the goal of improving functional mobility and reducing long‑term dependence on a wheelchair.”

Surgical intervention and rehabilitation

Over the years, Nicholas has undergone five orthopedic surgeries. Each procedure required months of recovery and rehabilitation, often accompanied by temporary functional regression. Despite these challenges, he remained highly engaged in physical therapy and home exercise programs.

“Every recovery period felt like starting over,” Cameron recalled. “But Nicholas was fully committed to the work. Our role was to support him — he was the one driving the effort.”

Dr. Keeler noted that Nicholas’ progress reflects an evolving understanding of CP management. “While spasticity often receives primary attention, addressing muscle weakness through targeted strength training is equally critical,” she said. “Nick exemplifies how strength-focused therapy and athletics can meaningfully improve function and confidence.”

School-based supports and independence

As Nicholas gained strength following surgery in elementary school, his family recognized that reliance on a wheelchair for school navigation was limiting opportunities to build endurance and independence. Through advocacy and collaboration with the school district, accommodations were made to allow him to ambulate more frequently with crutches.

Now a high school senior, Nicholas actively participates in his Individualized Education Program (IEP) meetings and works with school staff to align academic, athletic and personal goals. He competes with his school’s track team using a racing wheelchair and trains year‑round with creative, adaptive strength and conditioning strategies.

Functional gains and future goals

Nicholas’ commitment extends beyond formal therapy. In clinic, he often challenges himself to exceed baseline gait assessments, and he works closely with coaches to develop off‑season training tailored to his functional goals. He has also incorporated guitar playing into his routine to improve left‑hand strength and dexterity.

As he prepares to attend the University of Central Missouri this fall, Nicholas is focused on independence and continued growth. He plans to double major in Communications and History, with aspirations in radio, podcasting or broadcasting.

“I want to live as close to a physically typical life as my CP will allow,” Nicholas said. “That’s always been the goal.”

A model of longitudinal partnership

For Dr. Keeler, Nicholas’ story underscores the impact of sustained, collaborative care. “Sports, therapy and surgery all played a role,” she said. “But above all, it’s his discipline and engagement that have made the difference.”

With a demonstrated ability to translate care plans into meaningful, real‑world outcomes, Nicholas’ future goals — academic, professional and personal — are well within reach.

Prenatal Diagnosis and Early Postnatal Intervention

Evelyn’s care journey began prenatally when a routine 20-week anatomy scan identified potential congenital heart disease. She was referred to the Elizabeth J. Ferrell Fetal Health Center at Children’s Mercy, where she was diagnosed with critical aortic stenosis. The diagnosis prompted close weekly fetal surveillance, as physiologic changes from fetal to postnatal circulation would ultimately determine postnatal management.

“Physiology changes so much from fetal to postnatal life that you really don’t know how things are going to look,” said Brian Birnbaum, MD, FACC, FAAP, Interim Division Chief of Cardiology.

Evelyn was delivered at 39 weeks via planned C-section at the Fetal Health Center in May 2023. Immediately after birth, she underwent an urgent atrial septostomy in the cardiac catheterization lab to improve cardiac output and systemic perfusion. Postnatal evaluation confirmed critical aortic stenosis with severe left ventricular dysfunction.

“Her aortic valve was extremely small, and the left ventricle had already sustained significant scarring from chronic pressure overload,” said William Gibson, DO, Cardiothoracic Surgeon, Ward Family Heart Center and Brendan Tripp Elam Transplant Center.

Given the severity of ventricular dysfunction and right ventricular involvement, the care team determined that traditional staged single-ventricle palliation would not provide adequate long-term support. A multidisciplinary discussion led to the decision to pursue a transplant pathway.

Bridging to Transplant

At five days of life, Evelyn underwent a hybrid palliation procedure, designed to stabilize her circulation and optimize her candidacy while awaiting transplant. The procedure involved pulmonary artery banding, atrial septal stenting and rerouting systemic circulation through the right ventricle.

The procedure was complicated by intraoperative instability requiring CPR, but she recovered and was subsequently listed for heart transplantation at 10 days old with 1A status, among the youngest transplant candidates evaluated at Children’s Mercy.

Evelyn remained in the Cardiac Intensive Care Unit (CICU) for the duration of her wait. While many infants with similar physiology require a ventricular assist device, Evelyn was successfully managed medically with intravenous support, allowing her to avoid VAD placement and maintain developmental progress.

“When infants are waiting for transplant in the ICU, our goal is to preserve development as much as possible,” said Jill Van Stright, CCLS, CTRS, Child Life Specialist II. “Because Evelyn could be medically managed, she was able to experience as close to six months of early childhood as possible within the ICU environment.”

Transplant and Recovery

After six months on the transplant waitlist, a suitable donor heart became available. Evelyn underwent heart transplantation without major intraoperative complications, though the procedure required additional donor aorta to reconstruct her hypoplastic aortic arch, adding surgical complexity.

“The transplant went as smoothly as we could hope,” said Dr. Gibson.

Postoperatively, Evelyn experienced several expected complications, including a respiratory viral infection, hepatic vein stenosis requiring stenting, transient vocal cord paralysis and arrhythmias. None resulted in long-term sequelae.

Gradually, she demonstrated improved perfusion, weight gain and energy. By the holiday season, she transitioned from intensive care to a medical-surgical unit and was later discharged to the Ronald McDonald House to facilitate close outpatient monitoring.

Life After Transplant

Evelyn returned home in early 2024 and continues to receive multidisciplinary follow-up through the Advanced Cardiac Therapies and Transplantation program. Her current regimen includes dual immunosuppression and arrhythmia management, along with scheduled labs, quarterly clinic visits and annual cardiac catheterizations.

“She’s doing extremely well clinically and developmentally,” said Kay-Leigh Lawrence, MSN, RN, CPN, CCTC, Nurse Coordinator. “Her progress has been excellent.”

Now nearly 3 years post-transplant, Evelyn is meeting milestones with the support of speech, physical and occupational therapy. She is preparing to start preschool and recently took on a new role as an older sibling.

For her family and care team, Evelyn’s case highlights the importance of prenatal diagnosis, early multidisciplinary collaboration and individualized decision-making in managing complex congenital heart disease—even in the youngest patients.

Dr. Varberg is the principal investigator of the Varberg lab at the Children's Mercy Research Institute. The Varberg lab explores how placental function and pathology contribute to pregnancy success and the developmental origins of disease. 

The Lawrence D. Longo, MD Center for Perinatal Biology at Loma Linda University is a world-renowned research center in the field of maternal health and developmental physiology. The center constitutes a multidisciplinary group with a unique and broad perspective ideal for research, and committed to the training of basic and physician scientists.