The Snowball Effect

19 weeks, 4 days

This week was one heck of a roller coaster ride. Now that things have calmed down a bit, I'm ready to tell the story.

Went to the specialist on Tuesday to get more info on our little girl's kidney. On first instinct, I didn't like the office. And, the doctor that did the ultrasound and discussed things with us had a terrible bedside manner. He never even introduced himself, and we had to figure out on our own that he was a Doctor. Until we asked, I thought he was just a technician.

All that said....

He believes our baby has a rare malformation called a Duplex Collecting system... meaning that during development, the right kidney produced two of the these urine collecting systems along with an additional ureter. The second ureter appears to be floating in the abdomen with no attachment to the bladder. So, urine is being pushed into both areas and the fluid has nowhere to go in the extra one. It was a hard thing to hear. But, then the news from the doc got worse. He said that it concerns him that she has this "extra" part of her kidney. And because of my age, it may point to a chromosomal defect. That tore a hole in our hearts, and was the farthest thing from what we wanted to hear. Now the focus was on if our daughter had Trisomy something or other, or a similar horrible defect.

So, the next thing you know, we're being swept away into a genetic counselor's office....I'm crying....and they are trying to get us to sign the dotted line for an amnio. It all felt terribly wrong. There was no way in hell we were doing an amnio without preparing ourselves first and looking into who the doctor was to do the procedure. We both got the feeling like they were trying to sell us a used car, and that we were just a number, or some sort of opportunity for them to get their paper in some medical journals. It was the strangest feeling ever. It was like we were in an episode of Grays Anatomy and everyone was clamoring over us to get the "cool' case. It was incredibly insensitive. SG and I are still thinking about everything that was said to us, and it all feels so very odd.

When we got home, we immediately started looking into the problem. The info we found was very interesting. Many people who have a duplex system don't even know it. We read stories of people in their 60's finding out for the first time, completely by chance when having a scan of their abdomen for a different issue. So, the problem is definitely not life threatening. When discovered in utero, about 1/3 of babies end up having surgery after birth to correct the problem. And before ultrasounds were around, the problem was rarely discovered.

Secondly, NOWHERE did we find that this problem is associated with any chromosomal defects! And believe me, we searched all night long. My NT Scan and Quad Screen (AFP) all came back with great numbers. So, we figure the odds are for us, not against us.

We spoke to my OB on Wednesday (and we LOVE this man!). He was so gentle and listened to all our thoughts and concerns. He asked us a lot of questions and then re-evaluated my original screens for disorders. Like us, he believes that her kidney problem is rare, and is pretty much associated with a single incident and not part of a bigger problem. He also thinks that as long at she is doing fine (which she is), and that my screens came out so good, that there is no reason to do an amnio. He still thinks that the risks of doing an amnio is still higher than the risk of our daughter having a genetic disorder. He point blank said, "Michelle, it isn't worth the risk. I wouldn't do the amnio, especially if you wouldn't consider terminating the pregnancy." So that was it. Case closed. It was all we needed to hear.

We aren't going forward with the amnio and are believing that God has our little girl in his arms and is watching over her. We are believing that everything is going to be fine. It is all we can do to get through the day. And, we know that our hope is not lost. The odds are still greatly for us!