I have a genetic disorder which runs in my family and is maternally inherited. Myself (26) and my partner (26) started a specialised IVF treatment in 2021 to enable us to have a child while reducing the risk of my genetic condition being passed on. We had to wait over a year just for the application to be approved and then another 6 months for funding to be approved. I had my first egg collection in Jan 23 which didn't end well because of my condition I had a bad reaction to the sedation drugs so they could only get 4 eggs before cancelling the procedure half way through. I then had my second egg collection in May 23 under general anaesthetic and they managed to collect 12 eggs. So in total we had 16 in the freezer. We then had a long gap in between due to waiting lists.
We finally got to embryo transfer stage last week (Jan 24), and it didn't go well. By day 1 we had no embryos that made it. Apparently because of my specific type of genetic disorder my eggs don't cope well with freezing and thawing so after ICSI and another new technique the embryos were abnormal. I should mention that this type of IVF procedure is still a research project and is very new so they did not predict this would happen. They're not sure what the best steps are going forward as it seems this specialised IVF specifically for people with my genetic disorder doesn't work on my mutation of the disorder. I am heart broken, after all these years we finally thought this was it and now we're told its not going to work because of my specific mutation.
I am at the point where I've given up and I just want to TTC naturally, however my partner doesn't entirely agree with this because our child will 100% have my genetic condition passed down to them. Even if the special IVF technique succeeded there was still up to a 70% chance that my condition could still be passed on, but we wanted to try everything we could to make sure there was a reduced chance. Now I'm torn as I the only way to not pass the condition on is if we use an egg donor, which I really don't want to do, I know it doesn't matter to some people but it is really important to me to have a child that's biologically mine, I wish I didn't feel this way but I cannot help it, it's all I've ever wanted. But I know that I will pass on my condition and it's such a hard decision. At the start of the IVF journey I was dead set on not getting pregnant naturally as it wasn't fair and I would do everything I could to prevent that. But I just feel that I'm desperate now and the IVF journey has worn me down, my heart says to concieve naturally but my head says to use an egg donor.
My type of genetic disorder is a muscle disease that causes problems with energy production, my symptoms are reduced mobility and lactic acidosis for which I have been hospitalised twice in my whole life and recieved IV fluids for. My grandmother, auntie, mother, and 4 siblings all have this condition (they were not diagnosed until recently so didn't know they had it and therefore passed it on). I sometimes have to use a wheelchair for airports, shopping, long distances etc but the rest of my family are fine in general. It is a serious disease but also I would say we all live a happy life, we just have to adapt and find different ways of doing things.
I suppose my question is am I the most selfish person for conceiving naturally knowing my child will inherit my disease?? Any experiences with egg donation??