Treatment of Anterior Urethral Valve: Everett’s Story

Everett was treated by CHOP's Urology team as a newborn One week prior to Everett’s birth, we learned via routine ultrasound that he had hydronephrosis, a buildup of urine in his kidneys that caused his kidneys to become enlarged. We were assured this was very common and most likely due to pregnancy hormones and that it would correct itself after birth. On Dec. 23, 2016, we welcomed our beautiful baby boy into the world. We already had a 22-month-old son named Dominick and couldn’t have been more excited to celebrate our first Christmas as a family of four.

We were still in the hospital when we realized Everett wasn’t urinating properly. We consulted the medical staff and were again assured that his hydronephrosis would correct itself. But we weren’t comfortable waiting. After consulting with our own pediatrician, Everett began to undergo testing to determine why he wasn’t able to urinate properly. Unfortunately, the initial testing couldn’t tell us much. What Everett needed was a voiding cysto-urethrogram (VCUG), a test that uses special X-ray technology called fluoroscopy to evaluate what happens when fluid tries to pass through the urethra and bladder. That test had to be done at Children’s Hospital of Philadelphia (CHOP), which is about 30 minutes from our home.

Finding expert pediatric urologists at CHOP

The day after discharge we met with our pediatrician who recommended we make an appointment at CHOP for testing. As one can imagine, our emotions were running high. We called CHOP while we were still in our pediatrician’s parking lot. The nurse practitioner we spoke with went above and beyond the call of duty. She contacted Gregory Tasian, MD, a CHOP urologist, and explained the situation as best she could. Dr. Tasian recommended we go to CHOP’s Emergency Department immediately.

We rushed to CHOP and were quickly admitted as Everett received a catheter and had blood work done. At 8 a.m. the next day, Dr. Tasian met with us and asked us what questions we had. Throughout that day we met with many nurses and doctors, including Dana Weiss, MD, who would become Everett’s primary urologist. Everett had the VCUG test, which determined that he was born with an extra valve in his urethra (anterior urethral valve), as well as a cyst. The extra valve and cyst were in a very uncommon position and were blocking the flow of urine. Surgery could correct the defect, but first Everett’s medical team wanted to make sure his bladder and kidneys were healthy.

Vesicostomy surgery and recovery

Within 12 hours of diagnosis, Everett underwent a vesicostomy, a surgery that created an opening to his bladder through his skin. This would allow him to urinate directly from his bladder while we waited to find out if he was healthy enough for surgery. Over the next year-and-a-half, Everett received repeat ultrasounds to monitor the condition of his kidneys and bladder. Every visit presented us with better and better news.

At 18 months old, Everett underwent surgery to remove the extra valve in his urethra and close his vesicostomy. He now urinates naturally.

A clean bill of health and a zest for life

Everett playing at home Today, Everett is a happy 2-year-old. His kidneys and bladder are healthy and functioning to their full potential. He has a clean bill of health and just needs to return to CHOP for yearly appointments to monitor his kidneys.

If we had listened to the doctors who told us to wait, our son could be in kidney failure and could have died. We owe everything to the nurses and doctors at CHOP for their quick action and expertise. They saved our son’s life. We would do anything and everything for them because we get to raise our son because of them. There is no greater reward than to watch our son grow up.

Everett is so cuddly and loveable and has a zest for life. Everything makes him laugh and smile. He just wants to give hugs and kisses. He’s our little love bug. He loves playing games with his older brother.

We started a charity organization in Everett’s name. We do a designer bag bingo benefit every September. The money raised goes toward the greatest need at CHOP. There are so many families that need as much help as we did. It’s our way of thanking the team at CHOP for giving us our son.

As told by Everett’s mom, Michaela