Prune Belly Syndrome Clinic
Home to the nation’s only clinic dedicated to treating Prune Belly Syndrome.
Prune Belly Syndrome Clinic
The Prune Belly Syndrome Program at Nationwide Children’s provides comprehensive care for children with Prune Belly Syndrome (PBS) and related lower urinary tract conditions. As home to the nation’s only dedicated Prune Belly Syndrome Clinic, our team combines individualized treatment plans and ongoing research through an impactful bench to bedside model.
Prune Belly Syndrome is a rare condition that can affect the kidneys, bladder, urinary tract, abdominal wall, and reproductive system. Because of the complexity of PBS, families need a healthcare team with deep experience to provide confidence in a daily routine, while managing the intricate clinical and surgical challenges associated with PBS. Decisions made today can have long lasting impacts on kidney survival and overall health over one’s lifetime.
Nationwide Children’s offers a level of expertise and coordination not available anywhere else in the country.
The Nation’s Only Dedicated Prune Belly Syndrome Clinic
Established in 2023, Nationwide Children’s multidisciplinary PBS Clinic is the only dedicated clinic of its kind in the United States. Unlike many centers where children may only see a urologist, our clinic brings together experts across specialties to create a coordinated plan that addresses the full spectrum of a child’s needs.
Nationally Recognized Leadership
Our program is led by Linda Baker, MD, an internationally recognized pediatric urologist and the nation’s leading expert in PBS. Dr. Baker has spent more than 15 years dedicated to understanding PBS, providing not only the clinical and surgical care patients need, but also leading groundbreaking research and discovery to advance the field as a whole.
Under her leadership, Nationwide Children’s has become a destination for families across the United States. With nearly half of Nationwide Children’s PBS patients traveling from outside Ohio to receive specialized care, our team sees more new patients each year than any other institution.
A Close Partnership with the PBS Community
Nationwide Children’s has partnered with the Prune Belly Syndrome Network (PBSN) by supporting family engagement, hosting educational webinars, and partnering in the annual PBSN National Convention in Columbus. These relationships allow us to continuously learn from patients and families while building programs designed around their needs.
The Kidney and Urinary Tract Center
The Prune Belly Syndrome Program is part of the Kidney and Urinary Tract Center (KUTC), a nationally recognized center focused on improving care for children with kidney, bladder and urinary tract disorders. The KUTC is within the Nationwide Children’s Hospital Research Institute.
The KUTC brings together experts in pediatric urology, nephrology, genetics, fetal medicine and translational research to better understand how conditions develop and identify new ways to prevent complications, preserve kidney function and improve quality of life.
Our team’s expertise spans the entire patient journey—from the time of prenatal diagnosis of lower urinary tract obstruction (LUTO) and fetal consultation, through childhood surgeries and bladder management, to long-term monitoring of kidney health and transition planning into adulthood.
Children with Prune Belly Syndrome often require care from many specialists. Our dedicated PBS Clinic allows families to access many of these services in a coordinated setting rather than scheduling multiple appointments across different locations.
Linda A. Baker
Linda Baker, MD, is Co-Director of and principal investigator in The Kidney and Urinary Tract Center. She is a renowned physician scientist and an expert in rare complex pediatric conditions including prune belly syndrome and genitourinary surgical reconstruction.
As a renowned expert and leader in Prune Belly Syndrome (PBS), Dr. Linda Baker has evaluated and provided complex reconstructive surgical care for nearly 185 children with this rare congenital disorder. Her cutting-edge genetic research utilizes a massive DNA repository and advanced sequencing technologies to spearhead new discoveries regarding the underlying causes and bladder physiology of PBS.
Research is at the heart of what makes the Prune Belly Syndrome Program unique.
Led by Linda Baker, MD, researchers at the Kidney and Urinary Tract Center are conducting one of the only NIH-funded PBS research programs in the United States. The team has identified genetic causes of PBS, developed unique mouse and patient-derived cell models, created a PBS biorepository with hundreds of patient samples and published more than 60 scientific papers focused on PBS and urinary tract obstruction.
Today, researchers are using those discoveries to move beyond understanding PBS and toward developing new therapies. Current areas of investigation include:
- Identifying additional genes associated with PBS
- Studying why bladder dysfunction occurs and how to improve bladder emptying
- Preventing urinary tract infections by enhancing host immunity
- Discovering and implementing approaches to preserve kidney function
- Developing new medications and repurposing existing therapies
- Understanding fertility, mobility and long-term quality of life outcomes
- Advancing potential fetal therapies for lower urinary tract obstruction (LUTO)
By integrating research directly into clinical care, Nationwide Children’s is creating a pathway for discoveries made in the laboratory to become future treatment options for children and families. Nowhere else in the world is PBS care this comprehensive.
When new families contact the Prune Belly Syndrome (PBS) Program for care and/or second opinions, our team begins by understanding their child’s unique diagnoses, previous evaluations, and current medical and surgical needs. We review outside records, coordinate necessary testing, and connect families with the specialists who can best support their child.
| Fetal | Birth–4 months | 4–12 months | 1–5 years | 5+ years |
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Once medically stable, surgeries include:
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| Ongoing Care Throughout Childhood | ||||
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Your First Visit
During your first visit, your child may meet with multiple members of the multidisciplinary team, including experts in urology, nephrology, and other specialties as needed. The team will discuss your child’s kidney function, bladder health, growth, development, and any surgical or medical needs.
Surgical Evaluation and Treatment
Some children with PBS require surgical procedures to improve urinary drainage, reconstruct the urinary tract, achieve abdominal wall reconstruction, and manage related conditions. It is universally recommended that the surgery to achieve proper location of the testicles (called orchiopexy) should be performed by age 12-18 months old to give greatest hope for fertility. Our surgeons use an individualized approach because no two children with PBS experience the condition the same way, yet we strive to group operations together to minimize discomfort and the number of surgeries.
Pediatric and Teen Care and Monitoring
Prune Belly Syndrome requires ongoing monitoring throughout childhood. Our team follows our pediatric patients over time to protect kidney function, prevent orthopedic and joint complications, optimize bladder emptying and health, and support overall quality of life. Prior studies report that 67% of individuals with PBS develop kidney failure in their lifetime. Our goal is to change that statistic and prevent early kidney damage by controlling the three major threats to kidney function: 1) Inadequate urine drainage from the kidneys, ureters, and bladder, 2) Urinary tract infections, and 3) Untreated high blood pressure. We are also working hard to better understand the fertility potential of teens and young adult males with PBS. Families have opportunities to participate in research studies and clinical registries that are helping shape the future of PBS care.
