genetic counseling

Wilde83 · January 2015

Hi everyone,

I asked this in by bmb with a loss warning but haven't had anyone respond, and was wondering if anyone here could help.

My Dr. Is sending me to genetic counseling next week due to my first pregnancy ending from a rare (1 in 10,000) birth defect (bilateral renal agenesis aka. Potters syndrome...basically no kidneys...my daughter had no chance out of the uterus). It was a horrendous experience that I wouldn't wish on my biggest enemy, and I was beginning to feel better until my dr insisted I see the specialist.

I was wondering if anyone has had to have an appointment before, and could fill me in on what to expect. I was told that this was a sporadic occurrence, but the research suggests that there is about a 3% reoccurrence rate for those families who previously had it happen. What questions should I ask? Will they test for anything? What's the point of even going, and with your experience, did they alleviate or exacerbate anxiety?

Buttercup509 · January 2015

I don't know about that specific condition, but I have seen a genetic counselor before. We saw her after our loss and during the first trimester of this pregnancy.

After our loss, she talked about risk of recurrence and suggested we have karyotyping done. After the karyotyping results came back she gave us a specific risk for recurrence.

During our first trimester visit she said the only thing she would suggest would be a panorama which we had already done. She went over those results more thoroughly than the nurse from my OB's office.

There wasn't much to our visits. I found it reassuring to talk with someone so knowledgeable about genetics. I'm sorry I don't really have any advice or know what questions you should ask. I hope your appointment goes well.

jeslillyn · January 2015

Hi there! I'm sorry I don't know about that specific condition but I can share my experience with going to a genetic counselor. We were recommended to go after some markers were found on an u/s. They did a level two u/s at the appointment and then we sat with the genetic counselor who went over all these charts with us. They were able to give us different "odds" of what could occur. I'm not going to lie at the moment I had no idea what was going on and all the charts overwhelmed me. But the women we met with was very nice. of coarse after the appointment I thought of some questions. I was able to call her and she personally returned my call and spoke with me, she even told us at the meeting most people get overwhelmed there and always think of things after leaving. I found it comforting to talk to her because she really knew how to break things down for me.

Good luck at your appointment! !

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