Ureteropelvic Junction Obstruction (UPJ) and Kidney Stones: William's Story

William is a happy 8-year-old who loves football, baseball, soccer and basketball, and who is well aware of his “lazy kidney,” as he calls it.

The diagnosis - hydronephrosis and UPJ obstruction

During a routine prenatal ultrasound, Donna and her husband, Robert, were told that their baby Will, had hydronephrosis, which means the area of the kidney where urine is collected is enlarged or dilated. A few months after birth, an imaging study at a local hospital confirmed the condition.

WilliamWilliam had no symptoms but the hydronephrosis was monitored regularly during the first three years. Donna and Robert were told that Will’s hydronephrosis might improve or resolve on its own, over time; unfortunately, it did not.

When he was 3 years old, a urologist at a local hospital determined that Will’s hydronephrosis was caused by a ureteropelvic junction (UPJ) obstruction. The ureteropelvic junction is located where the pelvis of the kidney meets the ureter (the tube that drains urine into the bladder). The UPJ obstruction impedes the flow of urine down to the bladder, causing the urine to back up in the kidney and dilate it (hydronephrosis).

William would need a surgery in the near future to treat his UPJ obstruction and reduce the hydronephrosis.

Choosing CHOP to treat Will’s UPJ obstruction

Donna and her husband knew where they wanted to have Will’s surgery to treat the UPJ obstruction: The Children’s Hospital of Philadelphia (CHOP), with one of the best pediatric urology care team in the nation.

Donna and Robert took Will to see Pasquale Casale, MD, a urologist at CHOP and a pioneer of new minimally invasive techniques in urologic surgeries, including robot-assisted and endoscopic procedures never before performed on children. From the moment they met him, they felt they were in the best hands. Dr. Casale educated them about Will’s condition; he made sure they understood the diagnosis and explained every step in the treatment process clearly. “He talked directly to Will, always using terms that Will would understand,” Donna said.

Surgery to treat the UPJ obstruction

At 4 years of age, William had his first surgery to treat the UPJ obstruction. Dr. Casale performed a robotic assisted laparoscopic pyeloplasty. During this procedure, the obstruction is removed and the ureter is reconnected to the kidney. The goal of a pyeloplasty is to improve drainage of urine from the kidney. In laparoscopic surgery, doctors make very small incisions and use tiny instruments controlled from outside of the body. Patients have less post-operative pain, a shorter hospital stay and a more rapid recovery.

During the surgery Donna remembers how attentive the staff at CHOP were. “They always kept us informed of the progress,” she said. She felt confident Will was in good hands.

Will was discharged within 24 hours after surgery. He went back for a follow-up appointment to remove the uretral stent that was placed during surgery, and for an ultrasound to assess the dilation. Dr. Casale had treated the obstruction successfully. William’s kidney was still dilated after surgery, which is common in 70 percent of patients with UPJ, but there is a good chance the dilation will improve over time.

Experience with kidney stones

In Dec. 2008, when Will was 5, he experienced an onset of severe pain and started vomiting. He was admitted to a local hospital. After numerous lab tests and imaging studies, the doctors could not pinpoint the cause of the pain. The imaging studies were then sent to Dr. Casale who made the diagnosis: a kidney stone, which Will had already passed.

Donna, Robert and Will made what had become a familiar trip to CHOP. Dr. Casale ordered a 24-hour urine collection and an ultrasound to make sure the stone had passed and there were no other stones. There is a 27 percent chance of developing a kidney stone after a pyeloplasty surgery. The cause of kidney stones after pyeloplasty is unknown.

Kidney stones – a recurrence

In July 2011, pain started suddenly and again William started vomiting; this time, Donna and Robert knew it was a kidney stone. They drove to CHOP’s Emergency Department.

Will and his loyal stuffed penguin, Scamper.Prior to arriving, Donna spoke to one of the urologists on call and explained her son’s condition. The moment they walked in, a team was ready to take Will. The Emergency Department doctor had already reviewed Will's chart and knew his medical history. An ultrasound revealed a kidney stone embedded in the ureter.

At 8 a.m. the following day, Dr. Casale performed a ureteroscopy, a minimally invasive surgery that enables surgeons to operate on very precise areas of the body, and placed a ureteral stent to dilate the ureter to allow the stone to pass. Will spent two nights in the Hospital. The staff took excellent care of him and Scamper, his favorite stuffed penguin. He was then discharged and medication was prescribed to reduce any discomfort. The stone passed within a week after surgery.

A strong will

Today, “Will is doing great,” his mom says. The family traveled back to CHOP in September for another ultrasound and to review his latest 24-hour urine collection. “There were no signs of any kidney stones, the hydronephrosis looked better and the results of the 24-hour urine collection were good,” Donna adds.

Will’s older brother, Jake, often accompanies him to his visits to CHOP, where they both enjoy sightseeing after Will meets with his medical team.

Will jokes about his kidney, calling it his “lazy kidney,” and if someone mentions the word “kidney,” he will say “I know where that is!”

Reducing the chance of another kidney stone

Though Will’s kidney stones were not due to his diet, but instead to hydronephrosis caused by a UPJ obstruction, he is not allowed to drink soda. But Will doesn’t mind missing out on soda; it’s his favorite drink, chocolate milk, that he really misses. Chocolate milk has oxalates which increase the chances of developing kidney stones. Will has no other restrictions. He enjoys his favorite sports, including baseball, soccer, basketball and had just finished a season of flag football.

Will’s teachers are supportive and allow him to bring water bottles to the classroom to stay hydrated. Proper hydration helps prevent the urine from becoming concentrated with crystals, which can lead to stone formation.

Hope for the future

William will be followed regularly by the Division of Urology at CHOP where a team of doctors is actively engaged in studies on kidney stones disease.

Will is scheduled for regular appointments with Kerry Ashcroft, a nurse practitioner with the Stone Center in the Division of Urology. The Stone Center is a cutting-edge center providing multidisciplinary evaluation and management exclusively for children with stones.

Donna is very happy with the “wonderful service” her family, and Scamper, receive while at CHOP.

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