Understanding My Son’s Neurogenic Bladder

 

I recall in the hours after our son was born with spina bifida sharing this news as a part of our update:  

He also peed quickly in the first few minutes after birth, yes, all over the doctor. He has also peed on his own since, which is a great sign in regards to his bladder/bowel functions which are a common issue with spina bifida.  

Eight years later, I realize how hopeful, yet naive I was. I had no idea what our son’s urological health would look like. I prayed of all the complications he’d face, that he’d be spared the hardship that comes with bladder and bowel challenges that commonly affect individuals born with spina bifida.  

When Chance was a day or two old, and still recovering in the NICU, I first met his urologist. Although he was voiding on his own, the doctor let me know that they were running tests and would continue to test him as he grew. It was at that moment he informed me that my son had a neurogenic bladder.   

Gradually Coming to an Understanding  

The term “neurogenic bladder” sounded so daunting and we’ve learned it can be complex to understand. Truthfully, there’s no simple way to describe the many ways it can impact a person. We were informed that the nerves in his spine that control his bladder function were likely damaged and that in time we would see how much it would impact his health.   

We were told that medical tests would help us better understand how his spina bifida would impact his bladder and kidneys and that over time his function could change. We learned that over time kids with spina bifida often help medical teams understand their needs by the symptoms they experience. We were trained to watch for the signs of a urinary tract infection and sent home with a baby boy who had so many other complications, like his shunt, that we were focused on.   

Over the first two years I recall speaking highly of my son’s bladder health with medical professionals and with other new families who were faced with this diagnosis. He was able to pee on his own and was even known to pee on doctors during exams. We were told some of the function witnessed was promising, but that only time would tell us how he’d function.   

I look back now and realize just how little I understood about his neurogenic bladder.   

I tried to remain optimistic, but nothing could predict the damage that has impacted our son’s spine which now influences his urological health. As a baby, he voided just as any other baby would. As he grew to be a toddler and even today, he’s able to void on his own. He just isn’t always able to void completely, nor is he able to always feel when it’s time to urinate. Sometimes he does, but not always.  

And We Are Still Learning  

As Chance grew we began to learn how his neurogenic bladder would impact him. Fortunately we learned he was able to retain far more urine than most children and he showed no signs of kidney reflux. However, by the time he was 3½ years old he experienced a few minor UTI’s and one serious infection that lead to him being hospitalized for several days. Tests helped us learn that he was able to retain, but not always capable of fully voiding which contributed to the UTI’s he experienced.   

Over the years, he’s begun to experience bladder pressures that sometimes he is able to feel. The pressures have begun to thicken the wall of his bladder and are impacting his urological health. Chance’s ability to retain urine increases his ability to be social continent, however, the bladder pressures are beginning to show a need for us to medically intervene to calm his bladder down from spasming. Most times he doesn’t even recognize this is happening.   

All these years we thought he was healthy and doing well in regards to his urological health. Even once we began to cath him, we felt we were in a great place because he had achieved social continence. However, we once again are learning that a neurogenic bladder is so complex to understand.   

Everyone is Different  

For some people with spina bifida, the nerves that are damaged cause a person to leak continually. For others, they retain urine, like Chance, and are at risk of UTI’s. Some people with spina bifida experience bladder pressures and spasms that can damage the bladder and kidneys. It can be complicated to comprehend just how many different ways a person’s bladder can be impacted. Therefore, continuous medical care and testing is so critical to their health.  

It is not easy to understand why or accept the fact that your child has a neurogenic bladder. For years I prayed our son might never need urological interventions. However, as I’m beginning to understand and accept the details of our son’s challenges, I feel blessed that medical care has advanced to help our children stay as healthy as possible.  

Amanda and Chance

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