Friday, September 5, 2014

IVF, PGD...OMG so many TLAs!

Jeff and I always knew that if we were to have kids, we would do everything we could to minimize/eliminate the risk of them inheriting SCA3. I most likely won't outlive my hypothetical children and the possibility of them having this debilitating condition without anyone to take care of them just breaks my heart. From Jeff's perspective, he knows how much of a burden it can be to carry this dark cloud around and he wouldn't want to pass that on.

With that in mind, we scheduled consults with a reproductive endocrinologist (RE) and a genetic counselor earlier this year. Even though we still weren't sure if we wanted kids, we wanted to understand the options. Fertility treatments can be difficult on a woman's body and I'm not sure how much I'm willing to go through for children. Sometimes I feel like that means I don't deserve to be a mother but that's probably another conversation for another day.

The RE suggested that Jeff get tested for SCA3 because if he didn't have it, we wouldn't have to go through treatment and genetic analysis. While this is probably the most logical,straightforward option, this one has been really hard for Jeff and I to wrap our heads around. Like I explained in this post, we want to live our lives without an SCA3 diagnosis looming over our heads. But we also realize that if Jeff has the condition, he is likely to start seeing symptoms in his early 40s, based on family history. It would be one thing if we could live carefree for another 20-30 years - but based on his current age, it might just be another 7-10 years. If that's the case, we may have to get a lot more serious about future planning (with or without kids). So maybe it wouldn't be such a bad idea to get tested now.

If the results came back positive for an SCA3 diagnosis, our RE said that IVF coupled with PGD (preimplantation genetic diagnosis) can virtually eliminate the risk of having children with SCA3. The first step would be to get Jeff's DNA to set up the genetic probe to test the embryos against - this can take 3-6 months. Once this step is complete, then we would start the IVF process. I would get injections to stimulate egg production for 7-12 days, during which there would be daily 30-minute appointments with the RE to monitor egg development. Once the eggs were ready, they would be combined with Jeff's sperm to create embryos. The embryos would be screened either day 3 or day 5, depending on how they develop. Later is better but not always feasible.

We asked the RE if it was possible to do blind PGD so that we wouldn't need to find out if Jeff had SCA3. She seemed to think this was a strange request and said it wouldn't make sense to do it blind. However, our genetic counselor spoke with our RE and confirmed it was doable. I'm not sure how much information they share when conducting blind PGD. Would you know how many eggs you started out with? Would you know how many embryos made it to day 3/5 for screening? All that speculation and guessing would probably drive me crazy, I'd probably just want to know. But then again, maybe not?

After all that fact finding and discovery, I became terrified of the idea of having a child. IVF is incredibly hard for a woman to endure physically and emotionally. Getting plumped up by hormone injections so that I can produce more eggs sounds like something that is done exclusively to chickens, not humans. Plus, the idea of PGD makes me a bit uncomfortable. It seems like I'm trying to play God and determine which child gets to live and which child has to live in a freezer indefinitely. To be clear, these are just my own personal feelings on this. I think women that go through this for the dear children they will have and already love so so much are incredibly courageous and brave. I just don't know if I could handle all that.

We are leaning towards Jeff getting tested at this point. But if we find out he does have SCA3, I don't know if I will have the strength to go forward with IVF and PGD. He believes that if we find out he has SCA3, we have even more reason to have a kid because we would need that hope to look forward to and keep going. On an emotional level, I know he's right but on a practical level, my head and are screaming no. I pray that we never have to make that painful choice.

Iguazu Falls, Argentina, March 2010

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