Our Fear of Cathing after My Son's Diagnosis with Spina Bifida

One of the first things we learned after our son was diagnosed with spina bifida was his potential need to be catheterized. It was one of many complications we were told he may face that brought us the most fear.  

Fear of the Unknown  

We feared that our son Chance would be incontinent and live his entire life in diapers - unable to pee on his own. We feared having a child who would require a very private and invasive medical procedure performed. We feared it would hurt him. Or even worse, we feared Chance would dread the procedure or think less of his own life for needing to catheterize.   

In the weeks after our son’s diagnosis, we nearly gave up. We were told all of the challenges he’d endure in life could be a reason to give up. Apparently catheterization is one of the challenges spina bifida patients face that make so many parents wish to give up.   

Before our son was born many of our friends and family couldn’t imagine how we’d cope with the need to catheterize our child. We didn’t know how we’d care for a child with this many needs and feared his need to be catheterized would reduce his and our family’s quality of life. We even had family who are medical professionals who said they didn’t know how we’d cope with catheterization, because they didn’t know if they’d ever be able to do the care.   

Catheterization sounded so very terrible to us before our son was born. We prayed he never need to be catheterized.  

Hopeful Expectations 

On the day our son was born we cried tears of joy. He was able to pee on his own and even peed on the doctor the moment he was born. We’ve learned a large percentage of babies with spina bifida do have bladder function at birth. However, we learned the challenges they may face are so diverse and complex. We were told in time our baby boy would help us know what care he needed and that we would gradually learn how his bladder and kidneys functioned. We were told to care for him like we would any other baby.   

In the months after Chance was born, we learned more about spina bifida and how it may impact his urological function. We cared for him no differently than our other kids in the first three years. When our son was 3 ½ years old he got really sick with a serious UTI. He experienced high fevers, got very sick and was so lethargic. We feared his shunt may be failing again. Instead we learned he was facing his first very serious UTI. He was hospitalized for four days and placed on IV medications to help his body fight the infection. After a series of tests, we learned that although his body was able to eliminate urine on its own, his nerves that control his bladder function were damaged from his spina bifida and that he was not eliminating all urine. Over time this led him to have UTI’s that required medical attention.   

The Desire to Be Proactive   

After his serious UTI, I advocated for his needs and informed his medical team that our family would rather begin this journey to catheterization sooner, rather than later. I didn’t want to wait for him to get sick again – instead I wanted to be proactive and help him learn to take care of himself.

I once wished our son would never require catheterization, but now I recognize the benefits and knew it would help him live a better life. I feared it would decrease his quality of life but instead it is improving his quality of life because we have found for him, it helps reduce the chances of him getting so sick.   

Our Experience So Far

It has not been easy, but we’ve come to accept that catheterization helps our son. Although the journey to getting here has been overwhelming and brought many worries – we’ve learned cathing for individuals born with spina bifida is very normal.   

Chance has come to accept and understand why his bathroom routine is a little different and understands it helps him. It is understandable to fear cathing – but once you’re on the other side you learn it comes with many benefits. This care helps keep our son healthy. We wish we had understood the benefits before our son was born rather than thinking of it as a scary medical procedure.  

Amanda and Chance

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