What is an ectopic kidney? (and why should I care?)

I always start my health navigation lectures off by introducing myself professionally, 25 years of experience in health promotion and health research, blah blah, Masters in Public Health, blah blah, but I always mention that I have five children, each one of whom has taken me on a different journey through the healthcare system.  As today is World Kidney Day, I’m going to take a moment to discuss a medical tangent that I had never heard of until one child took me there. 

Almost all pregnant ladies choose to have an in-depth systems ultrasound during their pregnancy, and during one of mine I was told that my child had an ectopic kidney. “A what?” I asked. The only ectopic I knew about was an ectopic pregnancy, or an embryo developing in the fallopian tube and I didn’t think this was connected.  It seems that in about 1 to 5 per 1,000 births, the kidney bud fails to gravitate to the correct place during development and instead stays in the pelvic cavity.  In most cases, the person feels nothing, and my bet is that prior to ultrasounds many people had this anomaly and never knew it.  However, as rare complications like kidney stones or damage can occur, doctors recommend monitoring the situation.  This is why, since he’s been an infant, my son and I have our annual date with an ultrasound technician.

Not All Ultrasound Technicians Are Created Equal

It has taken me many years, and many conversations with physicians and technicians, to understand that ultrasonography is an art form, and a learned skill; it is not like pointing a camera at someone’s belly and taking a picture of the inner workings of the organs inside.  Bodies are different; children squirm; abnormal kidneys grow, well, abnormally, and don’t always lend themselves to accurate imaging.  Any of you women who have been pregnant, and have held your breath during that ultrasound as the technician rummages around on your tummy, until finally she says, “oh there it is” and you can breathe again, understand what I am saying.  That is why going to the same technician with the same machine for your follow up is so helpful.  Some machines are newer, and function better than others.  This is true for technicians as well.  Don’t waste your time going to a closer center if the doctor tells you he can’t really get an accurate estimate of kidney growth from the ultrasound. 

Follow up for an ectopic kidney is routine. Ultrasounds once a year till the child stops growing; additional testing if the infant/toddler develops urinary tract infections.  Yearly blood tests to monitor kidney function.  Sometimes it strikes me as odd that if you hadn’t done extensive prenatal ultrasounds, you would never know you had an anomaly, and none of this routine follow up would happen.  That often seems to be the question in healthcare.  How far do I go? How much effort should I make? When is too much or not enough? 

There aren’t any right answers here but I do have some guideline questions that may be helpful.

  1. Is the routine test invasive? If it doesn’t involve scalpels and anesthesia, it’s probably not so invasive.
  2. Will the results yield useful information?  Knowing that my child has one much smaller kidney may be necessary to know in the future.
  3. Is the risk of possible complication significant enough?  When I read that ~30% of all end stage kidney disease occurs in children with existing malformations, that was enough to make me feel like, okay, a once a year ultrasound and blood test is reasonable enough to possibly avoid future kidney failure.
  4. Are the tests accessible and financially reasonable? This may seem horrifying to some but it should be part of the equation.  If the test requires 4 hours of travel and 1,000 dollars in co-pay, it makes questions 2 and 3 that much more important.

Thank goodness that the decade plus of routine follow up has yielded no more than many bags of candy and much waiting room time. I like boring.  But it is important to know that all testing brings with it questions and responsibility, and many times, follow up.

Happy health kidney day!

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