Transitioning to Independence: A Teen Takes Charge of Her Own Medical Care



I am 14 years old and a high school student. One of the things that has changed for me as I get older are changes in my independence. One of the issues I have faced was bladder leaking.

As a child, I often had accidents. I had to use the bathroom frequently, and if I drank too much water, I would be in the bathroom every 5 minutes. Although I am 14, my bladder is the size of a 7-year-old’s.  As I got older, this became more of a problem. People who have sacral agenesis/caudal regression syndrome, like I do, often have to address the issue of bladder control because the nerves that control the bladder may be absent.

When I went to see the urologist, he recommended “cathing,” or using a small catheter tube several times a day to drain my bladder. Also, he gave me a prescription for some medications that would make my bladder more flexible and perhaps able to hold more urine. Taking medicine and cathing will be new responsibilities for me. This was one of the first medical appointments where I felt like I was in charge. I thought to myself, “I am ready for this change, and I am ready to work on this issue to improve this situation.”

Now I have started the catheterization procedure. Soon I will begin the medication, too.  These are new habits in my routine that I have to get used to doing regularly. The doctor has explained that we will try the catheterization and the medication first, but if that does not help enough, then we may try use of Botox for my bladder.  Then, if that is still not working, we may try a bladder augmentation.

When I was little, I did not have responsibility for my medical care, but now that I am growing up, it is important for me to understand my medical condition and the treatment plans. My interest in my health has also influenced my choices for a future career. I want to go to a college near Dallas and then become a pediatric inpatient nurse for Scottish Rite Hospital.