Thanks for your response KMN. I notice in your previous post you stated your PGD experience was a lot of waiting, was this through Monash IVF? We're booked in for Seminars at Queensland Fertility Group and City Fertility Group. I've found most clinics in Bris do PGD I just wonder how regularly and what they're success rates are. I guess I'm best to ask them these questions
I have a post that doesn't really fit into boo hoo and doesn't really fit into woo hoo, and general chatter would mean that it wasn't important. Not everyone would understand (on-line or in real life) and so i am putting it out here, because i want to lay it out.
I have been watching this thread for a long time, occasionally posting but not really fitting here yet either.
I have a neuro condition, and it is believed to be genetic. I went many years undiagnosed and my parents were told not to plan for a long life. Never thought i would make 25. Then, i was diagnosed and there was a treatment. Big change in my life, i'm doing well.
Then comes the thinking of having kids. There is a chance of passing it on. My kids experience would be different because it could be diagnosed early .... BUT do i want to pass it on? What steps would i take to not pass it on?
Have been following up genetic testing for 10 years now. I have been the instigator. Geneticists have come and gone and forgotten, but i have kept searching.
Have had different results along the way that look like we might be finding the mutation. I wonder why i keep searching. 1) i want proof. Living with an undiagnosed condition, people start to wonder if it is psychosomatic or something... including professionals.. (those with experience of chronic condition will know what i mean). 2) i want to know chance of my kids having it.
Now, on point 2. What is the point of this knowledge? What will i do with it? Why i am striving so hard? Would i terminate an affected child? Would i go thru PGD? Would i want a child tested at birth? what do i tell my kids if they are affected, and i did nothing to stop this? why why why do i keep searching if the information is not going to change my actions?
Lately, the final (?) lot of genetic tests have come back. the ones i thought would give me the answer. But again they were negative (ie no mutation found) back to step one.
But, i am actually ok with it. It's like i had to keep pushing until i couldn't go any further. And now it's like the information that i was seeking is not there, so i can just let go.
I have been hyper careful re contraception for so long bc i was scared i would get pregnant and not have the information to work with. But now, i can sort of say what will be will be.
I don't know the mutation, so i can't do PGD. I can't do prenatal testing. Can't even do postnatal testing. My only decision is do i have kids the 'natural' way, or do i not have my genetic kids and look at adoption.
I am not scared of getting pregnant though now. I have done all i could, and if i got pregnant, and if the kid was affected then we would work through that. I am probably in a much better situation than my parents because they didn't know what it was, and had no experience of what it might be like.
I am not actively TTC yet, but if it happened i wouldn;t be completely shattered like i thought i would have been in the past.
Getting to the stage of actually participating in TTC will come later (more thinking to do there), but at least i am at ease if it did come earlier.
Last edited by HotI; August 17th, 2009 at 08:50 AM.
Nice to hear from you - I am no longer actively posting here as my way will probably be to try to find an egg donor but felt I had to respond to your post.
I think you sound very clear and determined, you definitely have found your way - very glad you are okay with the genetic tests coming back negative.
Kate - I was very moved by your story. Like Sara, I felt the need to reply.
I wish I could give you some helpful advice. I do not believe in dead ends. I noticed in your signature that you are in Melbourne and as such, you would already have access to many experts in this subject. The only thing I can think of is to ask if you have tried other neurological and genetic doctors in Sydney or even further afield?
Kate, I truly admire your determination and clear-mindedness. I hope you are able to get to the bottom of this so you will have the option and opportunity of having children should you want to, in the future.
It has been a while since anyone has posted on here...
Just wanted to write that (to date) I have had a successful cycle of IVF with PGD. In my circumstance, we were testing for chromosonal abnormalities.
If anyone has any questions, however silly they may seem, please feel free to PM me and I would be happy to attempt to answer them and share my experience.
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