As kids, they underwent a common test for UTIs. As adults, it haunts them as a traumatic ‘nightmare’

This story contains descriptions of an invasive medical procedure and mention of sexual assault.

It’s been nearly three decades since Shelby Smith underwent a series of invasive procedures as a young child to diagnose the cause of recurring urinary tract infections. But the trauma of the procedure, which required her to be restrained while a physician threaded a catheter up her urinary tract without sedation, still impacts her profoundly.

“Until I got my medical records,” she said, “I had always just remembered it in the form of a nightmare.”

To process that trauma, the 28-year-old launched the grassroots Unsilenced Movement to help raise awareness about the test and hosts biweekly support groups to help people recover from trauma. When the group’s TikTok about the procedure went viral, hundreds of comments poured in on the video from adults sharing their own troubling experiences. That activism is bringing new attention to the decades-old practice, which is a mainstay in diagnosing and treating recurrent urinary tract infections in kids.

It’s estimated that 1 in 4 UTIs among children are caused by what’s known as vesicoureteral reflux, or VUR, which occurs when ineffective valves allow urine from the bladder to wash back up into the kidneys, where pathogens gain a foothold. While low-grade reflux spontaneously resolves on its own the majority of the time, severe VUR can lead to kidney failure if left untreated. The procedure is highly effective at diagnosing VUR.

“In high-grade [VUR], bacteria just goes directly up to the kidney, and multiple kidney infections cause scarring,” said Liza Aguiar, a physician and assistant professor of pediatric urology at Brown University. “That’s really what we’re trying to prevent long-term.”

To perform a VCUG, doctors clean the genital area and then insert a catheter to fill the bladder with contrast dye. Then, the child must urinate lying down on a table, often in front of multiple health care providers, under a fluoroscopy machine that captures internal images of the body.

The VCUG is regularly performed today, primarily on preschool-age girls, who are particularly prone to urinary tract issues. There are no good data on how often the test is performed, though researchers have estimated it could be as high as in the hundreds of thousands annually. And while research has shown that the test can be acutely traumatic for children, no studies on the long-term psychosocial effects have been published.

Doctors, parents, and patients themselves all acknowledge the value in the procedure. Patricia Donahue said her daughter’s recurrent UTIs in the early 2000s would leave her seriously ill.

“Just lifeless, pale, and out of it, running fevers. This test was the only way to know for sure,” said Donahue, who lives in Illinois. “If she was untreated, she could have lost a kidney.” Her daughter was 1 when she had her first VCUG of three.

But, there was also no question to her that the procedure itself was harmful.

“They needed to wrestle her to the floor,” Donahue said. “It was very traumatizing for all of us.”

Researchers have long known that some children experience the test as sexually traumatic. In 1994, a team looking to study how children retain memories of traumatic experiences used a cohort of 24 children between ages 3 and 7 who’d undergone VCUGs as a proxy for abuse victims. “This invasive procedure is similar in many respects to incidents of sexual abuse,” the authors wrote in explaining their methodology. Six weeks after the procedure, kids still remembered the majority of the examination, and behavioral measures during the test itself also suggested many were distressed by it.

A 2004 study, led by UC Davis psychologist Gail Goodman, also tapped into this patient population to assess memory recall. “I was studying it because it was a traumatic stressor for a lot of children,” Goodman said. “Some of the kids didn’t seem too hurt by it, but others were just screaming.”

There are clear differences between VCUGs and child sexual abuse. But Goodman’s study demonstrated relevant similarities between the two, including genital contact, forced removal of clothing, and enactment by a trusted authority figure.

“It was traumatizing for us researchers,” said Goodman, whose team filmed patient reactions during VCUGs. “I tried to bring attention to it at a conference, how bad it was for kids emotionally, and the people in the audience couldn’t even watch the videotape.”

These studies, alongside others that have surveyed children who’ve undergone VCUGs, have raised concerns about the procedure’s immediate and longer-term potential for harm.

The observations made in these studies echo the stories of former VCUG patients. Smith, who lives in Texas, said she was sexually assaulted twice later in life and in both instances, reverted back to how frozen and powerless she felt during the procedure.

For Ryan, a 36-year-old man who had three VCUGs as a child, the procedure was both physically painful and deeply humiliating. Like other patients who spoke to STAT, Ryan requested to be identified only by his first name for privacy.

Now, as an adult, he said he’s afraid of going to hospitals, and generally distrusts doctors. “It’s been 20 years since I had a physical,” he said. “Break all the bones in my body before I get another catheter.”

Leanna, who underwent a VCUG at age 3 and has since been diagnosed with PTSD, said the procedure deeply affected her trust. “Consciously, I know my parents weren’t doing anything wrong, but it gave me a lot of fear of authority,” she said, adding, “I’m afraid of being touched, too.”

Ellen Lonnquist, a family and trauma therapist at Womencare Counseling, said that given the young age of most VCUG patients and the perceived sexual nature of the examination, it’s possible that patients repress memories until events in adulthood trigger them.

“It’s an experience that your body and brain can’t possibly process in the moment,” Lonnquist said. “There is the messaging we appropriately give children around protecting themselves and their bodies. So, with the VCUG and lots of other medical procedures, it can be harmful if no one is working with the child to help them understand what’s happening.”

In a 2016 publication about the procedure, the American Academy of Pediatrics stressed the need for patient and parent education, given that the test can be stressful or even traumatizing, but did not provide specific guidance on how best to talk to children about the test. The organization also said child life specialists — who can help prepare or comfort children during the procedure — can be beneficial, but experts said not all hospitals have such specialists available.

The largest medical organizations have largely not acknowledged the potential long-term effects that some people say they have experienced after VCUGs, or the severe pain they described during the procedure. The National Kidney Foundation’s website states “the test [VCUG] is not painful, but the child may have some stress and short-term discomfort from placing the catheter.” When asked about research on the psychosocial effects of VCUGs, both the American Academy of Pediatrics and the American Urological Association declined to comment.

“It’s frustrating that the medical community conflates the procedure being low-risk with it being low-pain and low-trauma,” said Elise, a 27-year-old who had more than 10 VCUGs as a child. She has grappled with vaginismus, a painful and uncontrollable tightening of the vaginal muscles, which she believes is a result of her tests.

Her experience points to a fundamental gap between the perspectives of people who undergo VCUG and their providers; urologists and radiologists who order and perform the test rarely see the patient again if the condition is resolved.

“A lot of technicians are divorced from what’s outside of what they see,” said John Houston, a pediatric urologist at Lurie Children’s Hospital. “Their job is to do this and say goodbye.”

Houston and other physicians, aware of the potential risks, sometimes perform the procedure with sedation in an effort to minimize pain or traumatic experiences. 

Urologists like Brown’s Anthony Caldamone and Aguiar also advocate for the option. “I have a pretty low threshold for sedation,” said Aguiar. “If there’s a risk of memory formation, I’m concerned, so I always offer that as an option for parents.”

Houston’s clinic has pioneered completely anesthetizing some patients to eliminate distress. Nonetheless, he said that some parents are reluctant about this route due to the risk of side effects and the necessity of an operating room.

While many cases of VUR resolve on their own, some families whose children continue to suffer symptoms also consider surgery, which could help them avoid repeat VCUGs. “You don’t want to operate on your 2-year-old if there’s a chance you won’t have to,” Donahue said. “But every instance we had of that test was horrible.” The Donahues opted for ureteral reimplantation surgery, which creates new functional valves at the top of the bladder and requires several weeks of recovery at home, when their daughter was 5.

A newer alternative to the VCUG, contrast-enhanced voiding urosonography (ceVUS), shows promise to reduce some discomfort. Using ultrasound instead of X-ray, ceVUS allows parents to hold their child during the test without radiation risk, though it still requires catheterization. The test, which is about as accurate as VCUG, also lets children urinate while sitting upright in a chair, a more natural position. Nonetheless, the majority of U.S. facilities do not yet offer ceVUS.

Doctors can also do what’s called a suprapubic puncture, which delivers the contrast dye via abdominal injection instead of a catheter, though this requires a high level of skill to administer. Another option, renal bladder ultrasound, uses soundwaves to generate a sonogram of the urethral tract. It doesn’t require catheterization or voiding, but has low diagnostic accuracy.

Ultimately, how to best manage vesicoureteral reflux — with or without the use of VCUGs — remains controversial in medicine. While some hospitals are making inroads toward better experiences for young patients, not every facility provides trauma-informed care. “VCUG is a very common word,” Houston said, but “if you go to different places or even within the same institution it’s conducted differently.”

As people who have had VCUGs push for better treatment, they’re also raising the question of how the medical community can better inform parents of the potential risks.

“We can tell parents that we want this [VCUG] for their child,” Caldamone said. “But we can’t tell them the other side of it, in terms of developing some kind of psychosocial consequence. With or without sedation, we just don’t have the data. We don’t know how many children are affected.”

In 2012, Caldamone and Aguiar ran a preliminary study on the effects of VCUGs in the two weeks after the procedure. Of the 35 families surveyed, 11 noticed changes in their child’s behavior, many of which were “worrisome.” Beyond its small sample size, Aguiar also acknowledged that the research is limited, “because it’s the parents who were judging and not the child patients.”

Andrea McDonald, a graduate student at University of Pennsylvania who has studied the use of VCUGs, said there are few mechanisms for children to share their experiences with the procedure, and little awareness among parents about possible risks.

“It’s hard to really connect and mobilize and raise serious concerns about long-term implications,” she said.

In 2022, she conducted a small pilot study on the long-term mental and physical effects of the VCUG by surveying 21 participants. While the study wasn’t designed to show cause and effect, and hasn’t been published in a peer-reviewed journal, the initial results suggest VCUG patients were more likely than the control group to experience depression and PTSD symptoms.

Now, she is leading a similar study with over 400 participants. McDonald said she struggled with funding and could not enroll as many respondents as she had hoped. “If we want to do anything serious in public health I want to see the money show up,” she said. “We need to get more people and institutions invested.”

She expects to publish her findings in May 2024. “I don’t want to just say that this causes psychological problems,” McDonald said. “I am more interested in knowing whether these patients refuse to get care in the future. If they’d rather risk having cancer than screen themselves, because of the trauma.”

The trauma from VCUGs has also been a key force in unifying former patients from across the world. “I started Unsilenced with a mix of righteous anger and fear,” Smith said. “It’s a place where people in my shoes can hear, ‘It’s OK. You aren’t alone. We believe you.’”

After her first Zoom call with fellow VCUG patients, Ashley, 19, said she closed her laptop and cried, relieved at the community she found. “I jumped around, and I blasted music, and I cried. It was such an unreal feeling. Not something I ever thought I would get to have.”

“We deserve healing,” Smith said. “What better way to do that than with each other?”