So just to give an update, after speaking to the genetic counselor(who Ive been dealing with for over 2 years due to my special case) at Reprogenetics, she explained the test results to me, basically the test they built for my case they look at three markers for the NF, with this one embryo who she confirmed is female, they could only read one marker(which showed NO NF) but they could not read the results for the other two markers. So she could not give me an 95-100% that there is no NF because they could not read the other two markers. My question to her was when looking at my affected embryos do all three markers show the NF and she said YES. It would be less than 1% that one marker would not show NF and the other two show NF... So I basically made my decision to transfer from that information. I figure I was going to have a CVS anyway so I took a chance. I have choices after my CVS results, I can't take back a discarded embryo.
To answer your question 3ForMe, my husband has a mild version of NF-1 mostly cosmetic he has small bumps throughout his face and body(you would have to be close up to see) but luckily has no other complications from it. My 2 year old on the other hand is more severe. He has developed Xanthogranuloma because of the NF and these two conditions combined make him at high risk for JLL -Childhood Leukemia. Let me tell you there is nothing more heart wrenching that bringing your child into an oncology unit to get a bone marrow biopsy, I cried for weeks, and this happened two weeks after getting my BFN last year, how cruel...
He had a brain MRI at 12 weeks old to check for tumors, and will need them regularly. His doctors include a Neurologist, Dermatologist, Oncologist, ENT and Neuropthomologist. He has many Cafe au lait spots and now Xanthogranulomas, and just last week his ENT is worried that he might have tumors in his ear canal and we go this Friday to his Neuro to discuss another head MRI. He is very cognitively and speech delayed he has been getting therapy 4 days a week at home but not with much success we pushed for him to go to an early intervention program/school and starts next week.
I would take years off my life to take this away. He is only 2.5 years old and has been through so much already, and this is just the beginning, NF1 manifests much more after puberty, we worry DAILY and pray that he does not suffer.
So you see this is why we are so determined to have another "healthy" baby, and I don't think I have to explain to you ladies while I so desire a baby girl...
We did freeze one unaffected male, very happy we did : )