Neurogenic Bladder in Spina Bifida: What to Expect in the NICU and After Going Home

When I was pregnant with Beckham, I heard the words "neurogenic bladder" countless times as we met with different specialists. As a neonatal nurse practitioner, I understood the medical definition and what typically took place during a NICU stay (which I’ll help explain below).

What I didn’t fully understand was everything that happens after the NICU—and just how important your child’s pediatric urologist becomes. Long after you leave the hospital, your baby’s urologist will closely monitor their bladder and kidney function, helping guide treatment decisions as they grow. They truly become one of the most important specialists your child will see throughout their life.

I wanted to write this post to explain what a neurogenic bladder is, what your NICU stay may look like, what clean intermittent catheterization (CIC) is, and what you can expect as you’re preparing to bring your baby home.

What Is a Neurogenic Bladder?

One of the most common conditions associated with spina bifida is neurogenic bladder.

Normally, the brain, spinal cord, and bladder work together as a team. Nerves tell the bladder when to fill, when to relax, and when it’s time to empty.

With spina bifida, those nerves may not communicate properly because of the spinal cord injury. As a result, the bladder may:

• Not empty completely

• Empty at the wrong times

• Hold urine under high pressure

• Contract when it shouldn’t

• Have difficulty storing urine

Every child is different. Some babies have only mild bladder dysfunction, while others require lifelong management.

A Common Point of Confusion

One important thing to understand is that many babies with spina bifida are still able to urinate on their own. However, urinating doesn’t necessarily mean the bladder is emptying completely.

Think of it like a cup with water in it. Your baby may pour out most of the water, but a significant amount can still remain at the bottom. That leftover urine is called the post-void residual.

Over time, retained urine can increase the risk of urinary tract infections and, in some children, contribute to higher bladder pressures that can eventually affect the kidneys. That’s why your baby’s urologist pays such close attention to how well the bladder empties—not just whether your baby is making wet diapers.

This is also why many babies with spina bifida are catheterized even if they appear to be urinating normally. The goal isn’t to replace normal urination, but to ensure the bladder empties completely and help protect the kidneys for years to come.

The good news is that with close follow-up, regular monitoring, and the right treatment plan, many children with spina bifida grow up with healthy kidneys and lead full, active lives.

What to Expect in the NICU

Every children’s hospital has its own protocols for managing neurogenic bladder, so your baby’s care may look a little different than Beckham’s. This section describes the routine that was followed during Beckham’s NICU stay.

Clean Intermittent Catheterization (CIC)

Approximately 48 hours after Beckham’s myelomeningocele repair, the nurses began performing clean intermittent catheterization (CIC).

CIC simply means placing a small catheter through the urethra and into the bladder for a few seconds to drain any urine that remains after your baby has already urinated on their own.

At Beckham’s hospital, the protocol was to:

• Begin CIC approximately 48 hours after myelomeningocele closure

• Perform catheterizations every 8 hours

• Continue this for a total of 72 hours

• Measure the amount of urine left behind (called the post-void residual)

After those 72 hours, the average residual volumes help determine what happens next.

If the Residuals Are Less Than 10 mL

If your baby’s average residuals are less than 10 mL, that suggests they’re emptying their bladder well.

In Beckham’s NICU, families in this situation are still taught how to perform CIC before going home. Although routine catheterization may not be necessary at the time of discharge, it’s important to know how to catheterize your baby if they suddenly stop urinating on their own or if you notice a significant decrease in wet diapers.

If the Residuals Are Greater Than 10 mL

If the average residuals are greater than 10 mL, it means your baby is retaining urine after voiding.

In this situation, families are taught how to perform CIC at home and are typically asked to continue catheterizing on a schedule (often every 8 hours initially, although this varies by institution and your urologist’s recommendations).

Regular catheterization helps the bladder empty completely, lowers bladder pressure, decreases the risk of urinary tract infections, and—most importantly—helps protect the kidneys over time.

Beckham’s Experience

When Beckham first started catheterizations, his residuals were all over the place. Some catheterizations yielded only a few milliliters of urine, but then his residuals gradually began creeping upward (30-50 mL). As I watched the numbers climb, I knew we’d be continuing CIC after we left the NICU. As difficult as that realization was, I also understood the bigger picture: every catheterization was helping protect his kidneys.

Kidney and Bladder Ultrasound

Within the first week of life, many babies with spina bifida will also undergo a renal and bladder ultrasound.

This ultrasound allows the urology team to evaluate the kidneys and bladder for any signs of swelling, structural abnormalities, or other concerns.

Preventing Urinary Tract Infections

Because babies who require catheterization have a higher risk of developing urinary tract infections, some hospitals recommend sending them home on a prophylactic (preventive) antibiotic.

Again, practices vary from one institution to another.

Since Beckham required ongoing catheterizations, our urologist recommended that he continue taking daily amoxicillin after discharge.

The plan was to continue the antibiotic until he underwent a more in-depth bladder study called urodynamics, which would help determine exactly how his bladder was functioning and whether urine was refluxing (flowing backward) toward his kidneys.

Preparing to Go Home

One thing I appreciated about our NICU was how well they prepared us before discharge.

Our case manager coordinated with a medical supply company that would deliver Beckham’s catheter supplies directly to our home.

Knowing that the shipment might not arrive immediately, the NICU nurses also sent us home with extra catheterization kits and specimen cups so we had everything we needed during those first several days.

Looking Ahead

If you’re learning how to catheterize your baby for the first time, I know it can feel intimidating.

I remember thinking:

“How are we going to do this?”

“Will this ever become normal… like changing a diaper?”

The truth is—it does.

What once felt overwhelming eventually became just another part of our daily routine.

It wasn’t something I ever imagined doing as Beckham’s mom, but it became one more way I could care for him and protect his health.

And that’s really what neurogenic bladder management is all about.

It’s not simply about emptying the bladder.

It’s about preserving kidney function, preventing complications, and giving our children the healthiest future possible.