One Family’s Journey: A Better Way to Screen for VUR

UVA Radiology Inside View blog image showing UVA Chief of Pediatric Imaging, Dr. Reza Daugherty, with patient Lyra Gambone and her parents, Tony and Emily

UVA Children’s is one of the few places in the United States where contrast-enhanced voiding urosonography, or ceVUS, is used to screen for vesicoureteral reflux (VUR) in children and infants. ceVUS uses harmless, radiation-free ultrasound and allows parents to hold their children during the exam. Read about Lyra Gambone and her parents, Emily and Tony, who traveled to Charlottesville from Colorado to have Lyra screened for VUR at UVA Children’s.

Meet Lyra Gambone

Lyra Gambone, aged four-and-a-half, is laughing and playing in the quiet 4th-floor waiting room at UVA Children’s on a bright January day. She proudly shows off a small plastic unicorn that UVA Radiology technologists gave her a few minutes ago.

Nothing about Lyra’s happy demeanor would suggest that, just ten minutes before, she was having a screening procedure for vesicoureteral reflux (VUR), a condition that occurs in infants and young children. In children with VUR, sometimes called urinary reflux, urine flows from the bladder back up into one or both kidneys. It’s a common condition – estimated to occur in 1-3% of children – and depending on the severity of the disease, can require long-term antibiotics or even surgery. Often, the only symptom is frequent urinary tract infections (UTIs), which are uncommon in children under the age of 5.

After Lyra’s first UTI, her parents, Emily and Tony Gambone, talked to their pediatrician in their hometown near Denver, Colorado. Their pediatrician ordered a renal ultrasound, which showed that VUR was a possibility. Lyra’s urologist recommended a more precise screening for VUR only if Lyra developed a second UTI, which she did in December 2019. So on this day in January, the Gambone’s aren’t surprised when Dr. Reza Daugherty, Director of Pediatric Imaging at UVA, confirms that Lyra has the condition.

A Family History of VUR

a depiction of a genetic mutation

Emily and Tony know all about VUR. Tony was diagnosed with it when he was a child in the 1980’s. Back then, the only way to accurately determine if a child had VUR was a procedure called voiding cystourethrography, or VCUG, which uses radiation to image the bladder and urethra.

VCUG has two major disadvantages: first, it exposes children to radiation, which children are especially sensitive to. Tony thinks he had between 4 and 8 VCUGs as a child. “It weighed on me,” Emily says, “finding out, thirty years later, just how much (radiation) he was exposed to as a kid.”

Because of the radiation, a child cannot be held during a VCUG. And the x-ray equipment is large and intimidating. Tony remembers it as a traumatic experience: “It’s not a very pleasant procedure as a kid,” he says, “You can’t be anywhere near your parents. I remember lights and people with masks … it’s scary.”

That trauma stuck with Tony afterwards. “One thing that his mom mentioned was not being able to take him to have his picture taken at a (photography) studio,” Emily adds, “because when all the bright lights came on he would start screaming.”

A Better Way for the Next Generation

Once Emily and Tony suspected that Lyra had VUR, they knew that they wanted to avoid VCUG if at all possible. A radiologist they were in touch with from Boston Children’s Hospital mentioned an alternative to VCUG that was starting to be performed in just a few places in the United States. That alternative is called ceVUS, or contrast-enhanced voiding urosonography. ceVUS uses ultrasound, the same kind used to image a fetus in the womb, along with a special contrast dye that makes the ultrasound images clearer. Unlike VCUG, there’s no radiation, the ultrasound probe is small and unintimidating, and caregivers can hold their child during the entire screening.

ceVUS is a relatively new in the US and is only performed in a handful of hospitals nationwide. The Gambones couldn’t find a hospital in Colorado that could do the exam. But since they were visiting family in Virginia in January, Emily decided to check online and see if any hospitals in Virginia might offer ceVUS. When she looked, UVA’s ceVUS program and Dr. Daugherty popped up.

Emily wrote an email to Dr. Daugherty explaining Lyra’s history and the timing of their trip to Virginia. She was sure that the timing wouldn’t work – the Gambones only had a couple of days during their trip – but she was delighted when Dr. Daugherty wrote back and said he could do it.

The Gambone’s ceVUS Experience

the radiology waiting room at UVA Children's
The waiting room at UVA Pediatric Radiology.

Emily and Tony were struck by the responsiveness of the medical team at UVA. “They prepared us really well for it,” says Emily. “We got lots and lots of emails from the whole group. They answered every little question we had.”

Like VCUG, ceVUS requires that a catheter be inserted into the child’s bladder so that the contrast can be injected. At UVA, a Child Life Specialist in the radiology department, Savannah Sweatman, was in touch with the family beforehand and was in the room during the exam to help calm and distract Lyra.

But most comforting to Lyra was the fact that both of her parents were beside her for the entire exam. “Emily was on the bed with her and I was next to her, holding her hands,” Tony says. “It was clearly still scary for her, but it didn’t take very long, and it was the best possible way to do something that was bound to be uncomfortable.” And the Gambones didn’t have to wait for the results: Dr. Daugherty told them what he was seeing in real time during the exam.

Now that Lyra has been diagnosed with VUR, Emily and Tony will work with their urologist in Denver to figure out the next steps for Lyra’s treatment. But whatever happens next, Emily and Tony are confident that they made the right decision for their daughter.

While Lyra plays in the waiting room, Emily watches and muses on how all the pieces came together:

“I was picturing Lyra all grown up, and thinking that, if there was anything I could have done to reduce her radiation exposure, reduce her trauma, then that’s my job as a mom right now. I’m just so relieved with the timing, that this was available here and now and that everybody worked with us so beautifully to make sure we could have it done. We are so grateful for that.”

Emily Gambone

Learn More About ceVUS at UVA

UVA Children's logo

Now Emily and Tony want to spread the word about this safer and more comforting way to screen for VUR. “We definitely feel strongly that this was a really positive experience,” says Emily, “and that everyone should know about this option.”

UVA Children’s is one of just a small number of children’s hospitals in the country that performs ceVUS procedures to diagnose VUR. We’re proud to offer this safer and more comforting screening option. Click here to read an article that explains the advantages of ceVUS.

Talk to your care provider about screening your child for VUR at UVA Children’s. Or call UVA Children’s at (434) 243-5500 to learn more.

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