For whatever reason (probably some minor PTSD), I’ve never written about H’s diagnosis with kidney reflux, or Vesicoureteral Reflux (VUR).  Unfortunately, H got her first UTI at the tender age of 7 weeks and we ended up in the PICU for 5 nights, partly because the severe infection triggered her SVT. The good news is that because we got such an early diagnosis, we have been able to get on top of her VUR from very early on, and she hasn’t had a UTI since she was 11 weeks old. Please note that I am not a clinician, and this is a very high level “101” and every case of VUR is different.

What is it? Basically, the valves on H’s ureters don’t function correctly, so instead of the door closing (so to speak) on urine that flows from the kidneys to the bladder, urine “back flushes” into the kidneys. This reflux of urine creates a breeding ground for kidney infections (and then urinary tract infections) and when undetected or untreated, these infections could lead to kidney damage and/or scarring over time. For H, this is a defect that is most likely congenital.

It's all smiles until they make you lay down.
It’s all smiles until they make you lay down.

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How do you get a diagnosis? First things first, get that baby a urologist! Find one you love and trust, because a lot of the things done in their office (looking at you, catheter) are hard on both baby and mama, so you want to be as comfortable with their care as possible. After H’s hospitalization, our urologist quickly ordered a kidney ultrasound and a Voiding Cystourethrogram (VCUG). Both of ours were done in the hospital, and (due to her age) were done with no anesthesia, just a Wubbanub and the physical restraint of a very uncomfortable baby. The ultrasound is exactly what you would expect, the technician uses a wand with gel on the front and back of baby’s abdomen, and it’s over quickly. The ultrasound checks for kidney damage and (in H’s case) establishes a baseline for how her kidneys look. The VCUG is a radiological procedure, and it’s a little more invasive.  The child lays on their back on a table, a catheter is placed, and then contrast liquid is pushed into the bladder and pictures are taken of where that liquid goes. Based on the VCUG, you are given a “grade” of VUR, from 1-5 with 5 the most severe. Lower grades involve urine that only refluxes to the ureters, and in higher stages the urine refluxes all the way to the kidneys. With a stage determination, your doctor can estimate the percentage that your child’s VUR will resolve on its own. The VCUG will also show if there is bilateral reflux (both kidneys) or unilateral (one kidney).

How is it treated? The key to treatment is to keep the child infection free, and this is usually achieved through a daily low-dose of antibiotics to prevent infection. When we first started this protocol, it was recommended that we rotate antibiotics every 6 months, but our doctor recently informed us that a new study shows that Bactrim (which is super easy and doesn’t require refrigeration) can be given indefinitely, so this is what H takes once a day. There is also some research to show that probiotics are effective in the prevention of urinary tract infections and our doctor recommends this powder, which we add to her morning milk. Cases of VUR that don’t resolve on their own are typically corrected with a minor surgery that re-implants the ureter(s), and as long as we can keep infections under control, the surgery will not be done until she is bigger. We also do all the things that are a safeguard against UTIs in general, like limiting bathtub time and using fragrance-free soap, and changing a wet soggy baby out of a swimsuit as quickly as possible.

Other concerns or issues? H has struggled with constipation since she started solids. She takes Miralax every day, is no stranger to prunes, and gets doctor prescribed apple juice daily, even in this “NO JUICE” era of pediatrician oversight. I mention this in relation to VUR because conquering constipation is key for future potty training. “Holding it” is a good thing for potty training, but can definitely be a bad thing for UTIs. We don’t want any painful connotations with going to the bathroom. Another concern for us is future VCUGs, which will have to be done under sedation. These are necessary to check the status of the reflux, but we want to limit anesthesia as much as possible, especially since she has a heart condition. We discussed concerns with our doctor, and since H has stage 4 VUR that will most likely require surgical repair, we decided to wait a year for her next VCUG.

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As with all things baby, any medical condition or diagnosis can be overwhelming, and my hope was to break this down in a simple manner.  Any other VUR diagnoses out there?  Challenges/Successes?