5 Month old just diagnosed with VUR grade 3 and duplex collecting system

Sarah - posted on 12/22/2011

My daughter was diagnosed with bilateral grade 3 reflux when she was 8 months old after she had had 2 different infections just weeks apart. We believe following her diagnosis that she had likely had an asymptomatic bladder infection since birth. We were told they wanted to do VCUGs every 6 months to check for resolution of her reflux, daily antibiotic prophylaxis, and monthly urinalysis. After she developed allergic reactions to 3 antibiotics, we opted for the Deflux procedure. She had this done a week before her first birthday. BEST DECISION EVER! My daughter did get a post-op infection, but has been clear of infection since (5 months). She had to take her prophylaxis for 2 months post-op, but has been off since. She's a happier child. I don't worry so much (we had gone to ER probably 12 times before she was 1 for signs of infection/allergic reactions). I have faith that it likely worked (our urologist takes a wait and see approach, if we make it to 6 months post-op she'll be considered repaired). She won't have to have another VCUG (which she found traumatic) and we're very happy that she won't have to remember the trauma of this whole experience as she gets older. When she had the Deflux done, she was in the OR for about 25 minutes total, then about an hour in recovery (she took a while to wake up). We stayed in hospital for a couple more hours then she went home. No pain post-op at all either. She was tired the rest of the day from the anesthesia but was better than normal since then (she was irritable all the time prior to her surgery, is now a happy, smiley baby). I would encourage anyone who is facing this with their children to push for a referral to a pediatric urologist (adult urologists aren't necessarily as familiar with this). Do your research on options whether surgical or medical. Discuss what option is best for your child and your family. Then push for what you want. I don't regret our decision even one iota. I believe it was the right thing for her and us. Good luck with your journey.

Kara - posted on 01/05/2011

Hi Tammy! I'm sorry to hear about your daughter. I know hearing the news is difficult and there are so many questions and little information.

My daughter Audrey was diagnosed in the womb. She had stage 5 VUR and bilateral duplication. She also had 2 ureteroceles in her bladder which complicated issues. I've done a tone of research and we've been lucky to have one of the best pediatric urologist care for her since she was born. I'd love to be available to you for support or to ever answer any questions ... my email is kflynn05@yahoo.com.

By the way, Audrey had surgery on Oct. 4 and is doing so much better. We'll find out later this month if she still has reflux. Regardless, she does have kidney damage caused by the reflux in the womb and in her first 3 weeks of life (she had surgery at 3 weeks old to help relieve some of the pressure). We’ve been told that she will develop high blood pressure sometime during puberty and will probably require surgery again when she becomes an adult.

Please feel free to email me anytime. I know exactly what it feels like and would love to help in any way I can.

Melinda - posted on 12/11/2010

Hi Tammy. My 10 month old daughter was just diagnosed with grade 3 VUR, as well as bilateral duplication in her collecting systems. I also had questions regarding how the two were related. We initially saw a nephrologist who diagnosed the duplication, and she then suggested we have a VCUG to test for VUR.

The nephrologist explained to us that the duplication and the reflux are not related, but that more times than not, if there is a deformation in the kidney, they often see structural problems in the bladder as well.

VUR is a condition that they can outgrow, but they will have the duplication for the rest of their lives. We just have to monitor her kidneys and make sure she is not getting any infections. I can not find any information about the possible complications that her duplicating collecting ducts may cause. The radiologist suggested that it may be more difficult for her to grow out of the VUR because of the duplication.

I hope this helped! We have not met with our urologist yet, so we really don't understand the condition completely.