thecainfoundation

I have BOR Syndrome (as does my father and my son). None of us have any known kidney problems. It was my understanding that kidneys only needed to be checked at birth (or diagnosis) unless something unusual is found.

Is this true? Since my son was born, I've been doing some research online and every once in a while I see a reference to kidney problems later in life and having periodic checks?

Is this advisable? We now have three generations with BOR Syndrome but non of us have any known kidney problems. Consequently, we have not followed up on it. My son and I have both had kidney ultrasounds, but my father has not.

Here's something interesting...

We though our first baby would be born with BOR Syndrome because the 20 week sonogram showed enlarged kidneys (ureteropelvic junction obstruction). We had Level II sonograms every three weeks and she was delivered early because of it. But, she was scanned at birth and her kidneys were normal! And she did not have any symptoms of BOR Syndrome.

Fast forward three and a half years. My second baby also have several Level II sonograms (to follow what looked like a malformed aortic arch that ended up being normal after birth). We asked the perinatologist to look for signs of BOR (ear pits, neck cysts, etc) but she did not find any. The baby was smalish (29%) and I had too much amniomic fluid. We couldn't figure out why there was too much fluid. I was not diabetic but my doctor told me to cut the sugar out of my diet. We did not suspect BOR because the baby's kidneys appeared fine.

We he was born, it was clear he had BOR Syndrome (bilateral ear pits and a branchial cleft cyst). His kidney scan was normal and he passed his newborn hearing screen. However, he has failed all subsequent ABR's.

So, my question is, "Do we need to follow up on either child's kidney function (or myself for that matter)"?

It seems like we have the branch of BOR Syndrom that does not include kidney problems, but perhaps they can present later in life? It's strange that my first daughter had kidney issues that later resolved themselvs but didn't have BOR. And my son who has BOR did not have kidney problems (but there was too much fluid).

Dannah