I just returned from my visit with the pediatric urologist at Primary Children’s hospital. We appreciate the prayers and support that have been extended to us as we have tried to figure out exactly what is going on with Waylyn’s kidneys. Because we know of everyone’s concern, I would like to provide a detailed synopsis of what we know thus far, but please feel free to read ahead if it is a little too much detail.
At our 20 week ultrasound we learned that Waylyn had mild hydronephrosis—or swelling of the kidneys due to excess fluid. At this time we were told “most” of these cases clear up by the follow-up ultrasound at 30 weeks. I have learned that hydronephrosis is the most commonly detected anomaly in maternal ultrasounds (1.4%), and up to one half of these neonates do not have hydronephrosis on a postnatal ultrasound.
At the 30 week ultrasound we learned that he still had the hydronephrosis and it was indeed bilateral—meaning affecting both kidneys. After a visit with the perinatologist in
In reviewing my ultrasound, the urologist agreed that the kidney that had previously been significantly smaller than its counterpart (although still large), had caught up in size. Refuting my concerns that the blockage may have gotten worse the urologist explained that urine flow in a fetus peeks between 32-36 weeks and this supposed “worsening of the blockage” that many get concerned about is actually just an increase in the flow overloading the kidney, and therefore, expected.
Because hydronephosis is only the condition and does not explain the cause, the million dollar question still remains—what is causing the back-up? What is confusing in Waylyn’s case is that it is bilateral but the ureters and bladder appear normal. This means that it is likely NOT one blockage causing problems for both kidneys, but the blockages are independent from each other. Both the perinatologist and urologist agreed it is mostly likely a blockage of the ureteropelvic junction (UPJ), but could also be what is referred to as reflux. UPJ obstructions are also the most common cause of hydronephrosis affecting around 1 in 400 pregnancies, but less than 10% of those are bilateral, so feel free to calculate the probability if you like. There are other potential causes, but the UPJ seems the most likely.
I found it interesting that the UPJ blockage isn’t really a blockage. It was described to me as follows: “You’ve seen a stadium do a wave, then it comes around to the alumni section, and due to their timing or lack of interest the wave struggles until in works its way back to the students. The same thing happens at the junction so the wave is not moving the urine down appropriately and the lack of movement creates the obstruction.” If surgical intervention (discussed below) is needed you simply “cut out the alumni section.”
CONCLUSIONS:
1) There is no need the change where to have the baby or whom is delivering him. This does not impact labor and delivery.
2) Baby will start a round of low dose antibiotics at birth. During our stay at the hospital he will also have an initial ultrasound of his kidneys—not diagnostic of the blockage, but more of a benchmark to see if it has “gone away” or significantly gotten worse. If it has gotten worse, the urologist stated “we’ll see each other much sooner,” but due to my stable amniotic fluid this is not expected. Neither MD had any concern with Jerome doing the imaging.
3) Between 6-8 weeks we will head back to SLC for 2 dye exams that will be able to identify where the blockage is and assess if the kidneys are recovering. (Did you know it takes normal babies a 18-24 months to gain full kidney function?) Again, if there appears to be problems with the kidney’s recovery more immediate action will be taken, otherwise we will repeat the tests (which will likely not be much fun for Waylyn) at 6 months. Observation will continue at intervals based on previous findings until 18-24 months when, if kidney function is not normal, we’ll have to “cut out the alumni section.”
Primary’s does these procedures on a regular basis. The doctor reassured me that this was nothing I did ( I haven’t been self-sacrificing enough yet to consider this option) and likely not genetic ( I would have taken credit for this considering my family’s kidney issues)—more along the lines of stuff happens. He told me to call him when in the last weeks of pregnancy I was an emotional wreck still concerned about my baby’s well-being—apparently he does work with pregnant women on occasion.
Now, I feel really good. It still could go either way with regards to severity, but yet again, I feel like I received the best news we could have. Even “worst case scenario” options are treatable and I feel like we are in really good hands. I am still hoping for the disappearing act but comfortable with the other options if we need to pursue them.
Again, we feel so loved to have such a caring family. Thank you so much for your comments, concern, prayers, and fasts.
Sorry for the novel.
