Genetic Counseling

Back to the University of Minnesota today, we had our first meeting with the genetic counselors (Karol Rubin) that will follow Leyla and do the genetic testing on her...well, they're not doing the actual testing...her blood will be drawn at the time of her surgery and then sent off so some lab in Wisconsin to be tested and then she will give us the results.  The hope is that they'll be able to pinpoint the two non-working (of the 9 that are known to cause Joubert's) genes that Eric and I each passed to Leyla that caused her condition.  Man, that sounds terrible!  We don't by any means feel like this is something that WE did to Leyla but, in reality we both had to pass one non-working gene of the same type to her for Joubert's to be present.

The information given to us today was very helpful though left us with a lot of questions and things to think about.  We already knew that if at some point Eric and I decided to have another child, there is a 25% chance that he/she would also be affected by Joubert's Syndrome.  We were informed today that there are pre-conception as well as prenatal options available that can help to determine whether the new baby would have Joubert's.  Interesting. 

First thought...we would not ever, ever, ever terminate a pregnancy so, the prenatal options are out.  No need to even go any further than that.  So, then conversation turns to the pre-conception options. Basically, the DNA in my eggs and Eric's sperm would be analyzed and those that didn't have the non-working gene's would be implanted, much like an invitro fertilization process.  Hmm...that spurs many questions for me...

• Is that sticking our hands into something that God did not intend us to be able to control or manipulate?
• At some point in her life, Leyla would likely find out that we had that procedure done, would that make her feel like we took these extra steps to make sure that we didn't have another baby like her?  Can you imagine?!
• We love Leyla more than anything in the world, why would we even consider this?  Just to make life easier on ourselves?  Is that just being selfish? 
• What's better, for Leyla to have a brother or sister that has Joubert's and can totally relate to her or for her to have a brother or sister that doesn't have Joubert's and can love and support her and be her best friend regardless of her condition? 
• Doesn't the Lord only give us what He knows that we can handle?  Is He using Leyla's condition to teach us something about ourselves or about Leyla or using Leyla's condition for us to educate others about Joubert's?  If He will only give us what He knows that we we can handle; who are we to manipulate that before conception?

Let's rewind for a second...at this point in time there are no plans for us to have another child at all.  In fact, from the minute that we found out that we were pregnant with twins we agreed that we were done after this pregnancy!  I think both Eric and I are a little on the fence about it at this point for many reasons but, let me just reiterate, right now there are no plans at all for us to have another child!! 

I'd love to hear your opinions on this!  Feel  free to comment!  Have a wonderful Tuesday!

Jenni