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What is CAKUT?

CAKUT stands for Congenital Anomalies of the Kidney and Urinary Tract. That means something about the way the kidneys or urinary system formed during pregnancy is different from usual. These differences happen before birth, and they can affect how well the kidneys work.

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CAKUT is one of the most common causes of chronic kidney disease in children. It includes a range of conditions that can be mild or serious, and some kids might not show symptoms until later in life.

Common CAKUT Conditions

Here are some of the most common types of CAKUT:

  • Hydronephrosis – Swelling in the kidney because urine cannot drain properly

  • Vesicoureteral reflux (VUR) – Urine flows backward from the bladder to the kidneys

  • Dysplastic or hypoplastic kidneys – Kidneys that didn’t develop normally or are too small

  • Single kidney (renal agenesis or kidney removal) – A child is born with one functioning kidney or has one removed early in life

  • Multicystic dysplastic kidney – A kidney made up of fluid-filled sacs instead of working tissue

  • Posterior urethral valves (PUV) – A blockage in boys that stops urine from flowing out normally

How Does CAKUT Affect My Child?

Every child with CAKUT is different. Some have no symptoms and live healthy lives with monitoring. Others may get urinary tract infections (UTIs), or slowly lose kidney function over time. CAKUT is responsible for 40–50% of all kidney failure cases in children, so early detection and monitoring are important.

How Is CAKUT Diagnosed?

CAKUT can be found:

  • Before birth (prenatal ultrasound between 16–20 weeks)

  • After birth (because of UTIs, bloodwork, or imaging)

Doctors often use:

  • Ultrasounds to look at kidney shape and size

  • Urine tests to check for infections or protein

  • Blood tests to check kidney function

What Causes CAKUT?

We do not fully know but these can play a role:

  • Genetics (family history, certain gene changes)

  • Maternal health during pregnancy (e.g. diabetes)

  • Certain medications taken during pregnancy

Parents did nothing wrong. In many cases, it is just how the baby developed.

Can CAKUT Be Treated?

CAKUT means the kidneys or urinary tract formed differently before birth and those changes cannot be reversed. Doctors cannot restore a kidney that didn’t form properly. Once a kidney is underdeveloped or damaged, we cannot go back and make more of it.

But there are ways to manage complications and protect kidney health over time. Treatment depends on the type and severity of the condition.
 

  • For mild cases, like small kidney differences or low-grade reflux, children may only need regular check-ups to monitor kidney function and growth.

  • For moderate cases, doctors may:

    • Use daily antibiotics to prevent urinary tract infections (UTIs)

    • Perform surgery to fix blockages or severe reflux

    • Help with bladder emptying through voiding training or catheterization

    • Support nutrition and growth, including growth hormone if needed

  • In severe cases, where kidney function is declining, children may need:

    • Close monitoring of labs and blood pressure

    • Dialysis to replace kidney function

    • A kidney transplant if failure progresses

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But here is the challenge:

Today, there are very few therapies that actually stop kidney damage from getting worse especially for CAKUT patients.

That is why the CAKUT Foundation was created: to change that. We’re here to push for better treatments, earlier action, and a future where kids born with kidney differences have more options than just waiting and watching.

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CAKUT in Adults

While CAKUT is a condition that starts in the womb, many people do not learn they have it until they're teens or adults. Some only find out when they develop high blood pressure, have abnormal labs, or need imaging for another reason.

Common signs CAKUT may still be affecting you as an adult:

  • History of frequent UTIs

  • Only one kidney (or a known removed kidney)

  • Hypertension (high blood pressure) at a young age

  • Elevated creatinine or low eGFR

  • Known diagnoses like VUR, PUV, hydronephrosis, or solitary kidney

If you have any of these, it is worth talking to a nephrologist especially if you have never had one follow your kidney health before.

You are not alone. Adults with CAKUT are often left out of the conversation. CAKUT.org is here to help you:

  • Understand your long-term kidney risks

  • Access specialists who know what to look for

  • Connect with others who share your story
     

Join the CAKUT Community

If your child has CAKUT, or you are an adult who grew up with it, you do not have to navigate this alone.
We’re building a space where families can share real experiences, ask hard questions, and find the guidance we all wish we had earlier.
By joining our CAKUT registry, you will gain access to:

  • Other parents and patients who understand exactly what you're facing

  • Insights into the latest treatments and research

  • Practical advice for protecting your child’s kidney health not just now, but for the long road ahead

Together, we can learn from each other, advocate for better care, and build a future where CAKUT is not just something we monitor, but it is something we understand, treat earlier, and manage with confidence.

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