Kid needs no kidney: Seven-year-old girl makes full recovery after rare kidney disease
Jonson Kuhn/The Aspen Times
Lots of things can come to mind when considering the expression “double the trouble.” A parking ticket, a loud dog, a friend who smells bad – all of these things are worse in twos, and for a young girl in Snowmass Village, you can go ahead and add kidneys to the list, as well.
March is National Kidney Month, and what better way to recognize this specially-designated month than by sharing the extraordinary story of seven-year-old Charlie McPherson and her brave battle against a rare pediatric kidney disease mostly only seen in adults. her parents Tom McPherson and Tiffany Phipps tell how their daughter defied the odds to make a full recovery.
The family first moved to the valley when Charlie was still seven-months-old. As her mom Tiffany explained, the decision to leave their home in New York City was largely due to wanting a change in lifestyle to avoid raising kids in the city. Having been married in Aspen years prior, Tom and Tiffany were already familiar with the area; so when an employment opportunity presented itself for Tiffany in Aspen, it seemed like the right move to make.
A few years into relocating to Snowmass Village, Tom and Tiffany soon welcomed their son Finnley into the mix, and for the first time ever, Charlie was a big sister. All seemed to be on the right path for the family – that is, until some time during her first-grade year of school. Tiffany said that’s when they started to notice Charlie seemed to have less and less energy while showing little interest in extracurriculars until things finally came to a head last summer.
“We enrolled her at horse camp at (Snowmass’) Cozy Point Ranch, and they told us she was telling them about her back hurting, like hurting too bad to ride the horse,” Tiffany said. “We thought at the time she would be fine, but then the next day, they were like, ‘No, she can’t ride at all; she’s complaining that her back is hurting way too much.’ That’s when we knew we needed to look into things a little bit more.”
Tom said Charlie’s symptoms were first noticed much earlier during potty training, with signs of cloudy urine followed by frequent stomach aches, reduced appetite, and back pain. The initial suspicion by her pediatrician was urinary tract infection; however, the symptoms persisted, and she began losing weight despite antibiotic treatment.
Initial findings from an ultrasound at Aspen Valley Hospital showed all signs pointing to kidney stones, but the family said they still couldn’t shake the feeling that there was more to the problem that had yet to be revealed. With a four-week vacation planned overseas, Tom and Tiffany had to decide if they should trust the ultrasound or trust their intuition. Fortunately, they went with their intuition and drove Charlie to Children’s Hospital Colorado in Denver for additional tests, which ultimately would prove to be a lifesaving decision.
“They did CAT scans that day and then came back to us and said, ‘You’re not leaving – she needs emergency surgery; these stones are humongous,'” Tiffany said. “She had one stone that was over three centimeters, which is really big for even an adult male, and in a six-year-old kidney, that’s crazy.”
While at Children’s Hospital Colorado, Associate Professor of Pediatric Urology Dr. Kyle Rove, determined through the CT scan that Charlie was suffering from an unprecedented case in pediatric medicine – Xanthogranulomatous Pyelonephritis (XGP). As explained by him, XGP is a rare and serious inflammatory disorder of one kidney in all patients but extremely uncommon in pediatric patients.
“I was surprised how sick she looked when they first presented with this. Her parents confirmed that she had been increasingly having less energy, less appetite,” Rove said. “This (XGP) fits with the diagnosis but was a bit shocking to see. None of the providers in my group has ever seen or heard of this in a child.”
What initially appeared as kidney stones turned out to be a congenital blockage causing severe chronic inflammation, making the kidney nonfunctional and enlarged. Doctors soon discovered that Charlie’s kidney was so highly-infected that operating wasn’t an option; in fact, the only option was to remove the kidney entirely. Tom, Tiffany, and their daughter then had to wait an additional six weeks for the infection to subside enough to perform the second and final surgery.
While every moment of such an ordeal could be easily imagined as challenging, the family said the most trying time was without a doubt being inside the ICU after the initial surgery proved to not be enough. When asked if she agreed with her parents’ feelings concerning the ICU, Charlie simply replied, “worst, worst, worst.”
“When they realized it was so infected, that was very touch-and-go because they already opened up the kidney, and they didn’t want that infection to get out of her body because that would be terminal,” Tiffany said. “And so she had to spend a couple days in the ICU with heavy-duty antibiotics like tamping down on the infection.”
Rove had to consider the options available for a very complex and dangerous kidney removal surgery. Typically, XGP kidneys can make patients sick from the infection trapped inside. According to him, the tissues become very inflamed, and it’s recommended they be removed. Due to the nature of the inflammation, these can be very challenging surgeries, and most are done through an open incision. He ultimately opted for an innovative and less invasive approach of robotic surgery – a decision he said played a crucial role in the overall success of the operation.
“After discussing Charlie’s case with our team, we felt that we could try a less-invasive approach and see how things went,” he said. “If we had any concerns, we could convert to an open incision and finish the surgery that way. While it was a challenging case, we preserved and were able to remove it with robotic assistance, only making a lower, hidden incision to remove the diseased kidney.”
And after months of extensive worry and travel, followed by six weeks post-surgery, the family is happy to report that Charlie is not only feeling great, but also acting like her normal, rambunctious, “young” self again.
“She just seems like a totally different girl,” Tom said. “The amount of energy – and it’s only been seven and a half months? Yeah, the change has been unbelievable. We just came from figure skating tonight, but she also does cross country, she does ballet, she does ski down, she even does swimming. She’s just back to being a kid full of energy and beats up her brother. It’s pretty awesome to see.”
Tiffany added: “It feels great. I mean, we were super worried for so long. I think there’s always a lingering concern that something could happen to the other kidney. But we’re so happy that she’s totally recovered, feeling great. We just want to say thank you to the team at Denver Children’s Hospital, it is truly an amazing resource for the valley because we’re only four hours away.”
In addition to thanking the nurses and hospital staff, the family holds a special thank you aside for Rove, who’s quick decision-making and attention to detail not only helped lead to Charlie’s successful recovery, but also serves as a testament to medical innovation and gives families who are facing rare and challenging medical conditions hope.
“Having seen Charlie in follow-up after surgery, she is full of energy, smiles big, and is living her best life,” he said. “It is very gratifying to have had the opportunity to help her.”
To reach Jonson Kuhn, email him at jkuhn@aspentimes.com.
Kid needs no kidney: Seven-year-old girl makes full recovery after rare kidney disease
March is National Kidney Month and what better way to recognize the occasion than by sharing the extraordinary story of seven-year-old Charlie McPherson and her brave battle against a rare pediatric kidney disease.
