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.

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.

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.

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.

Join us for an enriching day filled with networking opportunities and continuing education sessions, focusing on the transplant family perspective, the latest innovations, transition data, pharmaceutical updates, social inequities and much more.

As a designated Approved Provider by the American Board for Transplant Certification (ABTC), Children’s Mercy Kansas City grants up 6.0 Category I Continuing Education Points for transplant Certification (CEPTCs) for the offering. ABTC Approval Number: 197-69.

Register here. 

Hotel Accommodations:

• The Westin Kansas City at Crown Center
• Sheraton Kansas City Hotel at Crown Center

Booking deadline is June 25. 

We look forward to welcoming you to this groundbreaking event!

On Oct. 18, Children’s Mercy proudly hosted BARE (Biliary Atresia Research and Education) “On the Road,” a powerful half-day event dedicated to supporting families, patients, caregivers and medical professionals affected by biliary atresia (BA)—a rare and serious pediatric liver disease.

This event was part of BARE’s national initiative to bring education, resources and community-building directly to leading pediatric institutions. In collaboration with BARE, Children’s Mercy’s Child Life team and liver nurses created a joyful “kids camp” for patients and siblings, ensuring a welcoming and supportive environment for all attendees.

The day brought together a diverse and passionate group of participants. BARE, a national nonprofit founded by parents of children with BA, led the charge in driving research and education. Medical experts from across disciplines, including hepatology, surgery, psychology, nutrition, and transplant care, shared their insights. Among them was Jonathan Merola, MD, from Cincinnati Children’s, who presented “Frontiers in Pediatric Liver Transplantation.” Families living with BA and those who have undergone liver transplants came together with their caregivers to share experiences and build community. Advocates like Lauren Wilmer from COTA (Children's Organ Transplant Association) and Chloe Simmons from Make-A-Wish Missouri and Kansas offered valuable resources and support.

The event’s impact was felt deeply. Families gained practical knowledge on diagnosis, treatment, mental health and life post-transplant through expert-led talks and breakout sessions. Connections formed among attendees who understood the unique challenges of the BA journey, fostering emotional support and solidarity. Open dialogue between clinicians and families helped shape future care models and research priorities. By visiting individual centers like Children’s Mercy, BARE ensured its resources reached diverse communities. All BA families were invited free of charge, including those receiving care outside of Children’s Mercy.

For Children’s Mercy, hosting BARE “On the Road” was a meaningful affirmation of its leadership in pediatric liver care, while highlighting the hospital’s commitment to holistic support—clinical, emotional, and educational—for families navigating chronic illness.

BARE “On the Road” was more than an event, it was a celebration of resilience, knowledge, and community. By bringing together experts, advocates, and families, it created a space where healing and hope could thrive.