So Why Aren't Hospitals Offering It?
Ionizing radiation. More often than not, this is the only risk listed by the vast majority of medical organizations for voiding cystourethrogram (VCUG), the “gold standard” test for diagnosing vesicoureteral reflux (VUR) in children.
While there are many other risks that doctors can and should be disclosing about VCUG—including urinary bladder rupture, vaginismus, CSA symptoms, and chronic illnesses, to name a few—this begs the question: What makes VCUG the “gold standard” today, in 2023?
Alternatives to the “Gold Standard” VCUG
For years now, there have been several reliable alternatives available to diagnose VUR in pediatric patients, including:
ceVUS (contrast-enhanced voiding uronsonography)
PIC Cystogram (positioned instillation of contrast cystogram)
CT Urogram (computed tomography urogram)
DMSA Renogram (dimercapto succinic acid renogram)
IVP (intravenous pyelogram)
While research has been ongoing for some time to assess the validity, efficacy, and accuracy of potential alternatives to the “gold standard” VCUG, many of these alternatives have been accepted as appropriate replacements for VUR diagnosis in children.
Because VUR is a complex rare disease with various grades, many less-invasive alternatives may be ideal for kids, especially those with low-grade VUR, which resolves spontaneously the majority of the time.
Critically Appraised Research Reveals a Safer, Superior Alternative to VCUG
The dictionary defines “gold standard” as the best, most reliable, or most prestigious thing of its type. So, why is the VCUG test universally promoted by physicians as the BEST of its type when multiple studies have proved this isn’t the case?
November 2021: “Contrast-enhanced urosonography (ceVUS) offers a radiation-free procedure, which, despite its advantages, is NOT yet widely used…With its high sensitivity and intraoperative validation, ceVUS offers an excellent alternative to VCUG, the gold standard in the diagnosis of VUR. In addition, ceVUS is a radiation-free examination method with a low-risk profile that offers an exceptional diagnostic tool in the diagnostic clarification of recurrent urinary tract infections with the suspected diagnosis of VUR and should also be included in the consideration of a diagnosis next to the established VCUG, especially in younger children."
November 2021: “There are many diagnostic options available, including voiding cystourethrography (VCUG) and contrasted-enhanced urosonography (ceVUS). ceVUS combines a diagnostic tool with a high sensitivity and specificity which, according to previous study results, was even shown to be superior to VCUG.”
June 2023: “This technical report aims to describe a new modality of VUD in children by replacing fluoroscopic VCUG with contrast-enhanced voiding urosonography (ceVUS). ceVUS using second-generation contrast media and harmonic imaging is a radiation-free and highly sensitive imaging modality used to detect VUR in children. This article describes the advantages of this method compared with a conventional technique. In addition to being radiation-free, this procedure of advanced videourodynamics method can better detect vesicoureteral reflux and intrarenal reflux combined with urodynamic disorders associated with VUR."
March 7, 2023: “Contrast-enhanced voiding urosonography (ceVUS) has been approved in the evaluation of vesicoureteral reflux and has been shown to have equal or superior diagnostic value to VCUG.”
March 27, 2023: “Although voiding cystourethrogram (VCUG) is currently the gold standard in VUR evaluation, there is ionizing radiation exposure. Contrast-enhanced voiding urosonography (ceVUS) uses ultrasound contrast agents to visualize the urinary tract and has been reported to be safe and effective in VUR evaluation in children. ceVUS can provide an alternate means of safely evaluating VUR with similar outcomes, potentially lower costs, and no exposure to ionizing radiation.”
Do Hospitals Offer ceVUS as a Safe Alternative to VCUG?
No. The vast majority of children’s clinics and hospitals does not offer ceVUS or other VCUG alternatives to parents of VUR patients, despite years of research showing some alternatives to be just as safe or safer than VCUG with comparable reliability and safety compared to VCUG. In fact, the largest children’s hospital in the United States does not provide ceVUS.
Why not?
While the exact reason why hospitals don’t offer ceVUS and other perfectly adequate (not to mention safer, more reliable, and less traumatizing) alternatives to the rape-like VCUG test don’t offer perfectly adequate alternatives to the inferior VCUG, there are various factors worth considering. Of these, one overshadows the rest: cost.
In August 2021, the New York Times released a shocking story about staffing shortages at hospitals during the COVID-19 pandemic—a story worth mentioning now, as we ask ourselves why hospitals and clinics are unwilling to provide safer, better, more affordable care to children with VUR.
By choosing to put profits over both their patients and personnel, many U.S. hospitals intentionally and knowingly let thousands of their patients die as a direct result of staffing shortages—an issue that could have been prevented with safe nursing ratios, though the hospitals would’ve made less money. We suspect that money is also playing a primary role in the implementation of ceVUS at a national level, and its ultimate replacement of the “gold standard” VCUG.
ceVUS Costs $800 Less Than VCUG, Yet Isn’t Widely Used
Starting in 2021, research has repeatedly shown that ceVUS is approximately $800 cheaper than the VCUG test for families, officially sealing its status as the new “gold standard” for diagnosing VUR.
Or at least, that’s what one would think. After all, “gold standard” is only used to describe things that are considered the best. Right?
Unfortunately, that isn’t how hospitals see it. Similarly to choosing profits over people during the thick of the COVID-19 pandemic, pediatric providers are seeming to do the same here. The largest children's hospital in the nation doesn't offer ceVUS, despite numerous studies establishing this alternative as safer, less traumatic, and more cost-effective test with equal or superior diagnostic value.
Some key characteristics that set ceVUS apart from VCUG include:
Superior diagnostic value: ceVUS diagnoses VUR with comparable or superior accuracy compared to the VCUG
Less traumatizing: Compared to its rape-like counterpart, ceVUS is less traumatizing than the VCUG for a couple key reasons: 1.) the parent is permitted to stay with their child during the procedure due to a lack of ionizing radiation, deemphasizing similarities to child sexual abuse; and 2.) the child is permitted to void sitting up, a more natural and comfortable means of diagnosis that allows the patient to retain a higher degree of independence and bodily autonomy
Radiation-free: Because children’s bodily tissues are 10x as sensitive to ionizing radiation than adult bodies, the lack of ionizing radiation for ceVUS—which incorporates ultrasound technology instead of fluoroscopy—is a huge game-changer for diagnosing VUR in pediatric patients.
More cost-effective: ceVUS saves families an estimated $800 compared to VCUG.
Standing Your Ground as a Parent
While Unsilenced is not a medical organization and is not intended as a substitute for professional pediatric care, there are some best practices that parents can implement to advocate for their child and safeguard their physical and emotional well-being.
As the Unsilenced Community continues to grow, it has become increasingly clear that the VCUG test has a high capacity for inflicting long-term damage in adulthood. Countless survivors in our organization have suffered a myriad of lasting health issues, especially in adulthood, after undergoing this traumatic sexual procedure—a fact that most won’t hesitate to share.
“We did not give informed consent,” one parent tells fellow parents of young VCUG survivors. “No medical professional sat us down beforehand and explained, ‘Oh, by the way, sometimes these girls remember this experience as CSA [child sexual abuse], 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.’”
She goes on to explain the common hardships that girls who undergo VCUG will inevitably experience as young adults. “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,” she explains. While the VCUG test provided a solid diagnosis, she adds, she would have gladly opted for an alternative if she had known the true risks involved—namely, the long-term problems that most girls face as adults.
“I may have opted for sedation, or may have chosen to just do the surgery to try to put VUR behind us,” she concludes. “I truly believe that the urological and radiological care my daughter received saved her life, but at what cost?”
To better understand what VCUG survivors go through, she encourages other parents to put on their “trauma glasses” to better understand their daughters’ unique perspectives after VCUG trauma.
“Let’s see life from your daughter’s perspective,” she urges other moms. “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 2 or 10.”
"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 2 or 10.”
There’s an alarming lack of legally effective informed consent being obtained prior to performing VCUGs—the so-called “gold standard”—on children today, in 2023. So, how can families and parents alike prevent others from suffering the same unfair ramifications due to the lack of disclosure around VCUG and alternative treatments?
Here are some ways that parents can take to ensure their child receives the appropriate, safest standard of care:
Don’t be afraid to ask questions.
A healthy and respectful relationship with your child’s pediatric caregiver is ideal, and part of that comes from engaging in constructive discussion that promotes bodily autonomy for both the parent and the patient. It’s all too easy to view doctors with a certain reverence, leading many parents to avoid asking questions due to fears of appearing naïve or uneducated.
But this couldn’t be further from the truth. While it's important to trust your doctor’s expertise in their field, it’s equally important to do your due diligence when evaluating that expertise. It’s okay to question what you don’t know—at the very least, it can empower you to come to informed conclusions on your own, regardless of how much it aligns with others’ opinions.
Don't hesitate to seek a second opinion.
When discussing VCUG, it’s okay to ask about alternatives. If your physician cannot provide or recommend viable alternatives for this procedure, this is likely a red flag, and second, third, or subsequent opinions may be invaluable to your child’s current and future well-being. After all, if the long-term psychological impacts of a “violent rape” can be avoided, why not help your child avoid it? The bottom line is that your child’s doctor should want the same thing, and collaborate with you to safeguard your child’s physical and mental health.
Back up your concerns with valid reasons.
While there should never be an expectation for parents to “prove” the legitimacy of questions and concerns, there can be benefits to communicating clearly and effectively with your child’s physician. Here are some examples of how to navigate dialogue concerning VCUG and VUR with healthcare providers:
“While researching the test, I noticed some studies showing that kids experience the VCUG as child sexual abuse. What steps has your clinic taken to address and work to eliminate these effects?”
“What resources do you provide for families before and after the VCUG to manage psychological symptoms, including child sexual abuse symptoms?”
“While researching, I saw that ceVUS is a proven superior alternative to VCUG. Do you offer this alternative? Why not? What other alternatives you can recommend?”
“If your institution cannot or will not offer alternatives to VCUG that aren’t traumatic, can you please recommend a hospital that can?”
“I understand that there is no standardized protocol for VCUG performance. Hospitals perform and record results very differently. Can you walk me through your organization’s standard protocol for VCUG administration?”
“What grade of VUR does my child have? What are the odds that my child’s VUR will resolve on its own?”
Putting VUR Parents Back in the Driver’s Seat
At the end of the day, medical personnel cannot deny that there is a superior and cost-effective alternative to VCUG available. While it should be widely available, it’s not—and it’s up to us to change that. We’re here to help parents save time, money, and undue hardships of parenting a child with lifelong sexual and medical trauma, resulting in a range of negative health effects. Say no to VCUG by showing healthcare providers what “gold standard” truly means: safer, effective, and less traumatizing.
This sounds like an improvement, though sedation and pain relief is needed for the catheterisation. Yes, parents, you are in the driver's seat. You have the authority in the care of your child. You will not regret standing your ground to advocate for your child's best interests.