SAMANTHA
An Unsilenced Survivor Story
"My only hope is that from here forward, doctors performing the VCUGs can better explain what is actually going to occur, give parents other options, and at the absolute bare minimum, offer sedation to these children. I would never wish that experience on anyone, much less an innocent child who will spend many years trying to make sense of it, like I have."
When I was born, doctor's told my mother that while in utero, I had only one vessel and one artery in my umbilical cord. This small defect can often cause all sorts of congenital defects. My only defect the doctor's were able find was a horseshoe kidney. Doctors had told my mother that day that if I were to have any complications from it, they would most likely surface within the first two years of my life. Luckily, they didn't.
Fast forward to when I was six. I had always been a kid that if there were an illness going around, I would surely get it. That being said, I suffered from stomach viruses A LOT. Or even if I didn't have a stomach bug of some sort, I would have stomach cramps very, very often. My mother, concerned about my stomach issues, took me to my pediatrician. Given my history with the horseshoe kidney, she referred us to the children's hospital about an hour and a half away from us (we live in a very rural area) to see a urologist with the concern that maybe it was my kidney causing the pain.
The urologist had decided that the best course of action to check up on my kidney was a VCUG. I remember the car ride to the children's hospital, again another lengthy ride for a 6 year old, where my mom had explained to me that I would be having a procedure done but obviously, to not be scared and that she would be right there with me. We get to the hospital, which is absolutely gigantic. We were taken into a room with a whiteboard where the doctor had drawn out what he was going to be looking for and what for me to expect. I don't remember this part well, other than being told I was going to need to drink a few juice boxes they were giving me, likely contrast. We go wait in a waiting room while I try to drink all the juice, which was quite a lot. I remember saying that I was scared and crying in the waiting room. A nurse had seen me upset and brought me a teddy bear to cheer me up. Now, as an adult, I feel she did this because she knew what kind of torture was going to happen once I got into that procedure room and felt sympathy for me.
I finally get all the juice down, and we are taken to the procedure room. I am told to undress from the waist down. As a six year, my mom had told me many times what my "private parts" were, and that most importantly, they were private. So, I immediately felt discomfort as to me, it felt like there were 20 people in the room. It is from here that my memory gets extremely vivid of this procedure. I am told to lay on the table, which was extremely hard and cold. The nurses put my legs in a frog leg position, and I start crying. I'm scared and I feel vulnerable. I am on display for everyone to see. The nurse tells me that they are going to put a "tiny tube" into my bladder. I say "okay", because at this point, it is my only choice. My mom is holding my hand when they insert it. I immediately start sobbing because it is so painful. A pain a little girl like me had never felt. I'm clenching my mom's hand in one hand and the teddy bear the nurse gave me in the waiting room in the other. The doctor from across the room watching the x-ray screen tells me that they are going to start filling my bladder up. I remember his next words so well. He said, "Imagine your bladder like a balloon. When it gets so full that it feels like you just can't hold it anymore, tell us." They start filling it, it gets more and more painful until I finally scream out, "It hurts!! I can't hold it!! Stop!" They get a bedpan and sit on the table next to me. I am crying uncontrollably, and my mom is trying her best to hold it together for me, but I can see she wants to cry, too. They tell me to sit on the bedpan, so I climb up on it with the catheter still in my urethra. Then, they tell me to "pee it out" and explained that the tube would come out as I urinated. I sob, and push to pee, while the whole room sits and watches like I am on a stage in agony, not understanding why I am being made to do this. To put on a show, it felt like. My mom grabs me up off the table as soon as I finish and holds me and doesn't let me go until I'm able to get dressed.
For years, I have been able to remember the acronym. VCUG. From then on, I never forgot it. I never forgot the pain and how I felt that day. I rarely talked about it after that day. It was so scary and traumatizing, that I choose to not speak of it. But it is a memory that pops in my head all too often. Up until just a few days ago when I saw the Unsilenced Movement on TikTok, I had thought that my memory of this was just that I was maybe dramatic. That my memory was just worse than it actually was. It wasn't until I visited the website that I found that what I had experienced was, without a doubt now, trauma. It ironic that I found this now, because now that I have children of my own, I'm now experiencing problems with my bladder again. I was told at the doctor's office a few weeks ago that I was being referred to a urologist and they would likely want to get a VCUG done, to which I said, absolutely not. Never again. Not even as an adult would I choose to submit myself to that torture. Not after what I went through as a child.
As it has been said by others, there was never even an offer for me to be sedated for that procedure. As I am now a mother to girls, I know now how my mother had to have felt that day as well. I cannot imagine watching your child go through something as traumatizing as that with the thought that this is the only option for answers. I am so thankful to have found this movement, as it gives some closure to how I have felt for all these years. My only hope is that from here forward, doctors performing the VCUGs can better explain what is actually going to occur, give parents other options, and at the absolute bare minimum, offer sedation to these children. I would never wish that experience on anyone, much less an innocent child who will spend many years trying to make sense of it, like I have.