Healing Your Relationship with Your Child After VCUG Trauma

The Parent's Perspective: A Guide for VUR Families

Trigger Warning: Graphic descriptions of VCUG. Please read with care.

I’m the mother of a VCUG survivor who is ten years old. She had three VCUG tests as a preschooler and remembers each one. She now suffers from PTSD. Over a year ago, she begged me to find a support group for her. I recently found the Unsilenced Movement support group and it has changed our lives. We eagerly absorb the content these brave survivors post online, in social media and on the website. We connect with the other survivors, and they are an inspiration to my daughter. She finally found her people!

From my year of doing research about VCUG trauma, at first reading survivor stories on Reddit, then talking live with some adult survivors, and also from just listening to my own daughter describe her childhood, one thing becomes very clear…we parents let our children down. Dramatically. In a life-altering way. These adverse childhood experiences ("ACE") have been proven to cause lasting damage.

Of course, we didn’t mean to hurt them, but it happened, and our children’s disappointment, rage, and distance from us are all valid responses to our role as medical decision makers for them, and to our role as parents after the test, in which we didn’t understand how the traumatic event impacted our children.

Big picture, we could not truly give informed consent for this test because NO ONE warned us of all the risks, especially of any remote possibility of long term mental health issues. We were lied to, and when some of us “multiple VCUG” parents mentioned that our kids seemed a little traumatized, we were gaslit and told that improvements had been made to make the test more comfortable. Um, OK? I guess we should proceed today?

I desperately want to give back to this VCUG Survivor Community, since they have given so much to us. Literally, they mail my daughter support letters! She feels less alone in the world. And what jumps off the page to me is how much they want acknowledgement about their traumatic experiences from their parents or caregivers. At a bare minimum, they want validation that the VCUG was traumatic to them, that it caused them to feel and behave differently because of the lingering psychological pain, that it robbed them of the childhood they could have had, that we parents failed to help them, and for that, WE ARE SORRY!

Parents, this is not a guilt trip.

I tell my daughter, “I feel 100% responsible for my role in the VCUG test and its effects on you, but I do not feel any guilt. I did the best I could do with the information I had available to me at the time.” Please, do not let guilt get in the way of you rekindling a relationship with your child.

If your child wants to be angry with you or with the medical system… great. Bring it on! At least she’s not being angry with herself, which is how so many of your daughters grew up feeling. My daughter spent years being angry with her three-year-old self. “Why didn’t I say, “No!” when I didn’t want them to see or touch me?!” I welcome her anger towards me, because I’m the one who signed her up for the test, drove her, helped hold her down while she screamed, gaslit her, paid for the test, and then helped her write a thank you letter to her urologist! I am responsible for my actions, even though my intentions were only from a place of love and health, yet if she is furious with my actions, she should be.

This is a letter to the parents/caregivers of adults who had a VCUG as a child. I’ll use the terms “parents” and “daughters” to represent the majority of VCUG survivor stories I’ve heard about so far. Perhaps you’ve learned recently about VCUG trauma through your own research, or your daughter shared this article with you, but I hope that no matter where you are in this journey these tips can help you reconnect with your daughter.

1. Put on your oxygen mask first.

Unfortunately, you’re on a very turbulent trip right now. Most of us thought we had put the days of VCUGs behind us. Many of our kids had vesicoureteral reflux (VUR) and they underwent one or more VCUGs. We remember the days of UTIs and urgent care, with maybe some kidney infections, hospitalizations, or surgeries thrown in to the mix. Life as a VUR family is so painful and confusing, and it’s no wonder that the medical management of VUR is the most controversial topic in pediatric urology. There is no National VUR Family Support Foundation to provide information, community, and hope.

Whether your daughter’s VUR resolved naturally or surgically, you probably hoped that those days were behind you. Unfortunately, VUR is the “gift that keeps on giving.” Just when some of the physical health issues in our kids subside, the mental health issues can become more apparent.

So, as you begin this journey of realizing the trauma caused by the VCUG, please get support in place for your own mental health. Perhaps you could connect with a therapist, use journaling, practice yoga, etc. With your child’s permission, invite family members and friends to join you on this path as you educate yourself, acknowledge your child’s trauma, and heal your relationship. Try to understand if you suffer from “secondary trauma” which is the emotional duress that results when an individual hears about the firsthand trauma experiences of another. We parents come back from a VCUG test day and state, “Well, that was traumatic for me!” Where does that traumatic memory live now in your body? Where did your own three-year-old child store it?

No matter your child’s age, you are the parent. Get mentally healthy enough so that you do not need to rely on your child for any support. You’re not competing with them in the Trauma Olympics. We parents do know that what they experienced is more traumatizing than our own journey around the VCUG test. You need to parent them now, and you also will probably need to show them how you wish you had parented them as children, because a part of their nervous system is still stuck at the age they were when they first had a VCUG, even if their conscious brain can’t remember it.

2. Educate yourself.

I’m sure we did all we could do to research different options for our children’s health care. I was so confused by my daughter’s constant array of medical symptoms and different bacterial UTI infections, so I spent a lot of time Googling “VCUG." All the major children’s hospitals reassured me that VCUGs were painless and risk-free, aside from the minimal radiation from the X-ray. Whew!

But I never once Googled, “VCUG Trauma”. Try it now.

In the first page, you’ll see words pop up like: traumatizing, violent rape, proxy for sexual abuse victims, analog to child sexual abuse, etc. What?! How can there be such a huge difference of perspectives? What do actual VCUG survivors say?

Check out the Unsilenced Movement website and spend some time focusing on the Survivor Stories. Prepare to be moved, and maybe even triggered, so have some supports in place as you slowly read others' stories. Other places to read Survivor Stories are on our official subreddit and on this original subreddit started two years ago. For many of the survivors, their reaction to these stories is, "I feel like someone else just wrote my life story for me."

These links are also good places for therapists and loved ones to learn about the true long term impact of the VCUG on some patients.

After your big sob fest and some much needed self care, browse our other social media platforms...public Facebook page, private Facebook group, YouTube, TikTok, Instagram, etc.

If you're ready to tap into some anger, look at these previously published studies on our website which show that the medical community has documentation starting 30 years ago that the VCUG is known to be traumatizing. These children were used as proxies for victims of child sexual abuse (CSA), in order to study memory recall after CSA, because the experience was perceived the same way.

I literally fell to my knees when I read these studies, sobbing, “They knew! They knew!”

Again, this information can be triggering, so please have some supports in place and take your time reading the studies.

Consider sharing these studies with therapists and loved ones. Revisiting the website (especially the blogs) and all the social media platforms previously listed will help you make more sense of the gaps in the experience of the VCUG survivors and that of the medical community.

Excerpt from the 2004 study where a blind panel of VCUG conductors rated similarities between VCUG and child sexual abuse (CSA).

3. Practice self compassion and kindness.

I get it; you’re a mess right now. A pulsing ball of rage, disgust, sadness, and the unique pain we feel when your child is harmed. Do not lean into guilt. You did the best you could do with the information that you had available to you at the time. Feeling guilty or defensive is not going to help you or your daughter heal.

We did NOT give informed consent. No medical professional sat us down beforehand and explained, “Oh, by the way, sometimes these girls remember this experience as CSA, and it alters the trajectory of their life, and definitely their relationship with you! And you will not be offered trauma-informed care, because we don’t really know how to prepare a child for CSA. And we should probably hand you a business card for a child psychologist, because you’ll need it, ha ha. On the positive side, your child will be able to pick out a prize afterwards from our toy chest!”

Yes, the test provided a solid diagnosis, which guided our treatment, but if I had known all the risks, I may have opted for sedation, or may have chosen to just do the surgery to try to put VUR behind us. I truly believe that the urological and radiological care my daughter received saved her life, but at what cost?

This might surprise you, but a decent number of VCUG survivors conflate their parents’ presence at the test with the sexual trauma their body remembers. Sadly, their three-year-old brain remembers that Dad drove them to the hospital, and then “something bad happened down there," and now they never want to have Dad come near them again. From an adverse childhood experience perspective, this actually makes perfect sense and is rightfully self protective.

And for families who absolutely need to do the VCUG test, they should be provided with ample mental health services immediately afterwards…after giving true informed consent and receiving trauma-informed care. This is really not too much to ask for this young, vulnerable patient population.

And unless you’re an expert in pediatric mental health, trauma, PTSD, etc. you may have viewed all of your daughter’s new behavioral changes as stubbornness, willfulness, laziness, and self-centeredness. We ended up raising traumatized children but we fully believed we were raising non-traumatized children. No one informed us. We did the best we could. Have some compassion for yourself. We are responsible, but we are not guilty.

4. Put on your new “VCUG trauma glasses” and look at your daughter’s life again.

Now that you are newly educated, let’s see life from your daughter’s perspective. Without getting into the steps of the VCUG itself, on the test day we demanded that our daughters suddenly abandon all the lessons about privacy, consent, and bodily autonomy that we had taught them, whether they were two or ten.

Before her third VCUG, my daughter made our room of female health care providers promise that no men would come in the room. Everyone promised, including me. So, as our daughter was half naked inside the fluoroscopy machine, a male attending physician and his team of male students or residents burst into the room to “watch the voiding show” while she urinated on herself.

My daughter somehow had the bravery to request that a nurse ask them to leave. The nurse laughed and said, “Oh honey, they can’t see anything!” as we all watched X-ray images of my daughter’s pelvic region up on the big monitor.

And what did I do? I froze.

And guess who “lied” and broke my promises and will never be trusted again? Me.

For some of us, when our daughters didn’t protest too much, all the adults in the room assumed the girls weren’t traumatized at all. What a successful test day! Then we failed to recognize that the changes in their behavior were connected to the test: fears, anxiety, avoidant behavior, defiant behavior, self harm, eating disorders, control issues, PTSD, etc.

Starting at age three, right after her first VCUG, my daughter refused to allow anyone to touch her, including family, friends, and teachers. I’ve heard of VCUG survivors who have struggled with obvious triggers like using public restrooms, showering, changing clothes, and visiting doctors. Because “the body keeps the score,” trauma can also be stored in any sensory experience associated with the event. VCUG survivors can also be triggered by bright overhead lights, cameras, lying on their back, the color of the hospital gown they were wearing, the smell of iodine, being restrained, having any of their requests ignored, etc.

Our nervous system can have many different responses to trauma: fight, flight, freeze, fawn, and dissociate. Revisit the most trying moments of parenting your daughter. What was she experiencing through the eyes of a three-year-old or ten-year-old? I’m sure we tried to rationally explain to our daughter that she was overreacting, but really, we were trying to negotiate with a dysregulated nervous system, which is impossible.

When triggered, PTSD victims feel like they’re reliving their traumatic experience, so you were trying to have a level headed conversation with a ten-year-old daughter who felt like she was three years old, being restrained on a table and penetrated by chatty adults who ignored her pain.

Another horrible byproduct of this test is that for many of our daughters, they learned to get through life by just being compliant in stressful sexual dynamics. They developed “learned helplessness” because no one listened to them on the test day. Apparently, VCUG survivors are also frequently victims of further CSA and SA (sexual abuse). To cope with traumatic situations, they learned at a young age to “just lie there quietly and be a good girl.” Some claim that the VCUG was more traumatic than the actual SA.

Hmm, so our daughters experience life feeling like CSA victims and yet they receive so much less support than actual CSA victims. Our daughters will not get the satisfaction of seeing their “perpetrators” punished, if only to make sure that other children don’t become victims, too. Instead of making every accommodation possible for our girls’ intense fears and odd behaviors, I’m sure we’ve rolled our eyes at their over reactions, irrationality, and sensitivities. I was so frustrated when my daughter refused to use her bathroom because, “the spider in my bathroom is going to take pictures of me naked and share them with other male spiders online.” I’m sure I delivered a very logical speech about spider abilities, the technology of cameras, and arachnids’ use of the Internet, and then I...further alienated her.

Another way to use your new “VCUG Trauma Glasses” is to read (or ideally, listen to) a book entitled "What Happened to You?" It’s a conversation between Oprah Winfrey and Dr. Bruce Perry, a psychiatrist who is an expert in child trauma. As I listened to Oprah’s soothing voice, whenever she mentioned trauma, I mentally inserted “VCUG trauma” and I realized even more what my daughter did experience in life, and what she didn’t have the opportunity to experience. I’m sorry! (After hanging out virtually with your daughters, I understand how important emojis are. Can I insert a sad face emoji here?)

Other foundational books in the field of child trauma are:

• "The Body Keeps the Score" by Bessel van der Kolk

• “Trauma Through the Child’s Eyes” by Peter A. Levine

And while we’re still thinking of our girls’ perspectives, think of how retraumatizing it can be when anyone defends the VCUG. Here are some phrases never to say to your daughter:

• “But it was medically necessary. It’s the gold standard for diagnosing VUR.”

• “The doctors tried so hard to make you comfortable and to distract you during the test. They really did care about your feelings. You didn’t complain in the moment.”

• “Technically, you weren’t actually sexually abused, because it was in a medical setting.”

• “I feel like you’re angry at me and are trying to blame me for something that happened when you were so young. You’re upsetting me. Are you saying I’m a bad parent?”

• “Don’t you think you’re overreacting? Your siblings were never this difficult.”

5. Apologize to your daughter…daily.

I apologize to my daughter every day. According to our therapist, who is an expert in CSA and medical trauma (the magical Venn diagram for these patients), my daughter is doing so well for everything she’s been through. Although my daughter has so much support (at home, in therapy, and at school with a Medical 504 plan to make accommodations for her PTSD), I see how often her trauma impacts her.

Some have asked me, “How often does your daughter get triggered? and I reply, “Oh, it’s only on days when she has to use a restroom, take a shower, change her clothes, or remember having done any of those activities, or think about doing any of those activities in the future. That’s all!”

Every time I see her struggle with PTSD, I apologize.

Even though this upcoming apology will actually help your daughter, understand that it might also be traumatic and triggering. (What?!)

"Some have asked me, 'How often does your daughter get triggered?' and I reply, 'Oh, it’s only on days when she has to use a restroom, take a shower, change her clothes, or remember having done any of those activities, or think about doing any of those activities in the future. That’s all!'"

Can you imagine the overwhelming emotions that she’ll experience to finally feel seen and heard, as the adult she is but also for the child she was? And as much gratitude that she’ll have in the moment, believe me that her next thought will be angry questions, “Why didn’t you believe and support me when I was a kid? Why didn’t you listen to me? Why did you agree to the VCUG? Why did you send me back there to have another one? Why did you gaslight me my whole life and act like I was a difficult, defiant, problem child?”

So, plan for this to be a very difficult conversation. Proactively asking traumatized people to describe their trauma can be…retraumatizing. Be gentle. My daughter wants to be a veterinarian, so we watch a lot of YouTube videos in which rescue dogs meet their “Furever Family." I’ve learned so much about parenting my daughter by watching videos of human adults interacting with abused puppies for the first time. As a parent, it is demoralizing to realize how much the medical system, and its intentional and willful systemic disregard for pediatric voices, causes long lasting harm.

And your daughter may not want to have this conversation according to your time table. You could say/write/text that you acknowledge her VCUG trauma, you want to apologize, and you want your daughter to let you know when and how she wants to have that conversation. Learn about the “window of tolerance” which is the theory that everyone has a range of intensities of emotional experience which they can comfortably experience, process, and integrate. Clinically, the window of tolerance metaphor is popular amongst therapists working with survivors of trauma, particularly with clients who experience dissociation. Be mindful of the time, location, and duration of your conversation. Sometimes small doses of connection are better than “the big talk”. VCUG survivors may not want to hear about the details of what you observed on the test day and how you reacted. This conversation is daughter-led and daughter-focused.

"As a parent, it is demoralizing to realize how much the medical system, and its intentional and willful systemic disregard for pediatric voices, causes long lasting harm."

Here’s what I tell my daughter:

“I’m sorry. I’m sorry. You were traumatized at a young age and I take 100% responsibility for that and for how I parented you afterwards. It’s OK to direct your anger towards me and the medical system, but please don’t ever direct it at yourself. Every single 'defiant' or 'avoidant' behavior has been your amazing brain and body protecting yourself. Bravo for keeping yourself alive and for trying to protect you from outside harm for all those years.

"I can’t change the past and erase the decision to have you undergo the VCUG test, but I can apologize for failing to see how much it impacted you. You were in so much psychological pain and you were trying to tell me with your words and actions and reactions, and I didn’t understand. I’m sorry for any times I triggered you or retraumatized you by failing to protect you. Trauma is in the eye of the beholder, and you felt traumatized. End of story.

"I should have listened to you and to all of your verbal and nonverbal communication. You brilliantly knew how to take care of you, and I probably blocked or ignored your efforts to seek safety.

"I will apologize to you every day. How can I make this up to you? I can further educate myself and others. I can go to therapy with you. I can help you with whatever advocacy you want to pursue, to make sure other families don’t have to go down this path. I, too, am so angry at the medical system that failed us all. You are not alone. I am your ally. My relationship with you is so important and I’m so impressed with the resilience, bravery, self awareness, and maturity you’ve always displayed. Your instincts for self preservation allow me to know you as an adult and be so proud of the woman you’ve become.”

You can’t change the past, but you can change the future.

6. Heal your relationship with your child.

• Ask your daughter how you can best support her.

• Do more research on VCUG trauma on your own.

• Write letters to previous medical providers together.

• Go to therapy with her.

• Get therapy for yourself.

• Read No Bad Parts by Richard Schwartz, PhD. All parts of your daughter helped protect her and keep her alive. “Some discoveries I’ve made about parts: Even the most destructive parts have protective intentions. Parts are often frozen in past trauma when their extreme roles were needed. When they trust it’s safe to step out of their role, they are highly valuable to the system.”

• Change your language and perspective. Here is an example from my family. My daughter has heard me tell teachers that she has privacy issues. My daughter pointed out, “They are needs, not issues.” I now agree that language can affect our perspective. For example, just because I personally need to drink water every day, doesn’t mean I have “water issues.” I just have “water needs.”

• Become the snowplow parent she needed. It’s a parenting style that seeks to remove all obstacles from a child's path so they don't experience pain, failure, or discomfort. And, it can really help our children who have been traumatized. How can you help today? Describe her journey to doubting relatives and help them understand how not to retraumatize or trigger her. Attend medical appointments to help make sure she is not being gaslit. Ask her how you can help make her life easier.

• Tell her how you would have parented her at each stage of her development or at each memorable meltdown in her life. “When you refused to shower at the community pool, I wish I had…” or “We knew you were scared to go to summer camp, and I wish we had prepared by…”

• Advocacy. Advocating for VCUG reform can be incredibly healing for survivors and their loved ones.

• Speak up on social media. Take care to respect your daughter's privacy by communicating with her first.

• Write a blog for our website. Again, be sure to maintain the level of privacy your child requires.

• Investigate the potential for legal action. Many lawyers offer free consultations. If you and your daughter feel like filing a lawsuit would be an empowering way to seek justice and healing, you may want to explore a potential medical malpractice claim or even a class action lawsuit.

• Fund current research. Keep an eye out for studies seeking adult recruits who underwent VCUG as a child to investigate the long-term mental and physical health effects of the test.

• Fund research on VCUG alternatives.

• Start the National VUR Family Support Foundation. Because it doesn’t exist yet.

• Join the Unsilenced Support Group. Attend the Zoom meetings and contribute comments on social media!

• Get Oprah to write about this topic. Read soothing words aloud to us from her new "VCUG Trauma" book!

7. Hope is possible.

My ten-year-old daughter and I are the closest we’ve ever been. I attend therapy with her each week and she and the therapist hold me accountable for all of my intentional or unintentional actions which have harmed my daughter. According to my daughter, she feels like she can tell me anything now.

While I never initiate physical contact with her, the amount of touch that she has initiated has exploded exponentially in the past year. I’ve become a safe person to her, someone she seeks for comfort and warmth. I still get envious when I see other parents kissing their children, but I relish her snuggling into me on the couch as she lets me brush her hair.

She has blossomed at school, extracurriculars, and in friendships. She feels empowered to unapologetically set up boundaries with others. We heal through advocacy and we are driven to prevent other families from enduring what we’ve been through. She helped me write this letter and we both hope it can help your family to heal.

The following image is a drawing from a 10-year-old VCUG survivor of “What a VCUG felt like to me” to illustrate that trauma is in the eye of the beholder.

"She has blossomed at school, extracurriculars, and in friendships. She feels empowered to unapologetically set up boundaries with others. We heal through advocacy and we are driven to prevent other families from enduring what we’ve been through. She helped me write this letter and we both hope it can help your family to heal."

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Help us raise awareness to help parents and caregivers take back control and protect their children against preventable harm. You deserve the right to give informed consent for your child's long-term health and well-being. Visit our blog to explore resources, studies, and more about the lasting effects of VCUG that doctors aren't telling you.