Tough Choices

We have to make decisions for our children every day: what they wear, what they eat, where they go to school. Then sometimes we have to make decisions that have a more lasting impression. Oftentimes with spina bifida, the nerves that help control the bladder are affected.  

Because of this paralysis, many children with spina bifida use intermittent catheterization to empty their bladder. Our daughter also has rods to help with scoliosis which greatly reduce her ability to bend, which will possibly make independently catheterizing more difficult for her.  

We would love to be able to help her gain more independence with cathing, but as it is, that is very difficult. 

One option that could possibly help her gain some independence in this area would be a procedure called a Mitrofanoff. In this procedure, the doctors make a pathway to cath through an area on the stomach, oftentimes the belly button. With this, children who have range of motion, or stability issues, can simply reach down to their stomach and cath from their chair. This opens up the possibility of cathing independently.  

As with any surgery, you have to weigh the pros and the cons. Surgical options are not for everyone. While providing a potential path for more independence, it could have complications. There is also a cosmetic aspect to think about, although they do seem very discreet.  

I struggle with whether or not to make this decision for her now or wait and let her decide when she is old enough. I know it has the potential to help her a ton, but will she want this choice for herself in the future?  

As special needs parents, we are often faced with choices like this that leave us unsure of ourselves. We just have to do our research, weigh all the pros and cons, and trust that we are doing the best we can for our kids. 

Amanda

In order to keep you informed of new stories from Amanda and Maddie, please click on the link below to 'Join Our Community'. All we need is your name and email address.