Posterior Urethral Valves (PUV) | What to Expect

Our multidisciplinary team treats children with mild, moderate and severe PUV.

A routine prenatal ultrasound can often detect signs of severe PUV. If this happens, your obstetrician will want to observe your pregnancy more closely. This can mean having more frequent ultrasounds. The obstetrician may refer you to the Cincinnati Children's Fetal Care Center so that specialists can monitor you and your baby. Depending on the child’s condition, the team may offer treatment during pregnancy.

PUV affects each person differently, which is why a personalized treatment plan is so important. Your child’s treatment plan may include surgery, medication, bladder drainage strategies, nutritional support, behavioral medicine and other therapies.

Screening for possible problems is an important part of your child’s treatment plan. Our team will recommend certain screening tests for your child. Screenings help our care team be proactive about your child’s health. They help us see small problems so we can treat them before they become more serious. These tests may take place annually or on a different schedule depending on your son’s needs.

Unfortunately, even with excellent medical care, between 15 and 20 percent of people with PUV develop a condition called kidney failure. This can occur before the child is born, during the first few weeks of life, or later. When this happens, the child will need dialysis or a kidney transplant. Our team works closely with the Kidney Transplant Program at Cincinnati Children’s, whose specialists are leaders in this field.

Our core team of specialists includes pediatric urologists and complex urology nurses. When additional care is needed, this team expands to include our colleagues in other specialties, such as nephrology, kidney transplant surgery, neonatology, nutrition, psychology and developmental pediatrics.

These providers communicate with one another to make sure your child receives excellent, well-coordinated care. They are always available to talk with referring physicians to provide care updates, talk about test results or discuss treatment.

Your child’s nurse coordinator works with the rest of the team to ensure your child’s needs are met. Her job is to:

• Be your family’s point person between appointments
• Answer questions about your child’s care and future needs
• Connect you to other specialists who can answer your questions if she cannot
• Review test results and share any concerns with the team
• Help schedule appointments with other specialists
• Explain what health screenings your child may need

During your first visit to the PUV Center, you will meet the care team who will talk with you about your child, review his health history and test results, and answer your questions. At the end of the visit, the team will talk with you about how your child is doing and next steps. You will leave this appointment with a specific, personalized treatment plan.

Treatment or additional testing may happen right away, or at a later time. The team will make sure you know about helpful resources at Cincinnati Children’s that are available to you and your family, such as social workers and financial counselors.

The team will schedule regular follow-up visits. During these visits, our physicians and nurses will:

• Talk to you and your child about how things are going
• Provide a thorough physical exam
• Use screening tools to identify any new concerns
• Make referrals to any other specialists who can provide care and support

Your child’s nurse coordinator helps plan each clinic visit in advance. If you have specific concerns about how you child is doing, please let her know before his next appointment. Making sure all the resources you need are available when you come to the clinic helps us make the most of each visit.

Children with PUV need long-term follow-up care. This is especially important if their PUV is moderate to severe. With this kind of care, many people with PUV will have normal bladder and kidney function, normal sexual development and fertility, and a good quality of life.

Follow-up care also is important for children with mild PUV, even if they do not have obvious symptoms. That is because PUV is a chronic condition, and it can cause different problems at different stages of life. The care team will keep a close eye on your child’s bladder and kidney function, growth, development and other concerns.

When it is time for your child to transition to an adult care provider, we will help the transition go smoothly.

The PUV Center cares for patients from our local area, across the nation and around the world. We understand the unique stresses of long-distance care and make every effort to arrange a comprehensive, coordinated visit with your child’s multidisciplinary care team. We are also interested in collaborating with your local physicians to care for your child both here and at home.