eSCAping Type 1

Happy b e l a t e d International Women’s Day!

So, this happened:

I mean, I get it, they’re trying abortion as murder, so execution is a plausible punishment. But, now that supporters are basically saying living, breathing adults should be KILLED over something they might not have had any control over, I reallllllly want you to see another side to this issue.

Please read this. I promise you can walk away with the same exact beliefs as you have now. I’m sure going to try to persuade you, but, alas, YOU are the only one in control over your own body thoughts. Even if it directly impacts someone else’s life. Oh.

Ok, let me lay out just one possible probable scenario…

If someone with Spinocerebellar Ataxia REALLY WANTS to have a baby, their child naturally has a 50% chance of inheriting their parent’s disability. Then, if the kid has Ataxia, they risk passing it on, and so on and so forth.

Or, instead, Ataxians could try utilizing IVF & PGD, which gives them the best possible chance of NOT passing the disease on and effectively ENDING this chronic illness for future generations.

Now, remember, their ultimate goal in spending a ridiculous amount of their personal time/money/sanity on this is to have a living, breathing, Ataxia-free baby. Soooo the more eggs they fertilize, the more can then get genetically tested, and the more likely they are to find a healthy one to implant!

Just to give you some statistics – when my friend did this, she made/extracted 24 eggs, 13 of them were successfully fertilized, only 4 of them developed enough for genetic testing, and then only ONE was Ataxia-free!

Usually, the lab will freeze all of the healthy embryos and discard the unhealthy ones. Not much of a point in keeping those around, right?

Except that now some U.S. government officials decided that terminating embryos for ANY reason is abortion, which is now illegal, so some doctors do not even have the option to discard any fertilized eggs, regardless of their status.  A LOT of people could lose their medical license… their freedom… their LIFE… for doing something we thought was good.

I’m absolutely positive some readers will say this is one of those “exceptional, rare cases.” That this example is NOT considered abortion. You’re not discarding any viable fetuses so it’s OK.

Butttt if “life begins at fertilization” and if “the only exception under abortion laws is to save the life of a pregnant woman in a medical emergency” (wording taken DIRECTLY from state laws) then yes, PGD definitely applies.

So, let’s pretend it’s 2021 and you’re a 25-year-old Oklahoma resident who fell in love with someone who has SCA. You both want to experience pregnancy and natural birth and having a healthy baby and being parents and forming a family and all that fun stuff, so the two of you decide to try out this new amazing medical process called PGT to have the best chance of doing that. And, a few years and thousands of dollars later, you have a baby! Yayyy!

Now, there ended up being only TWO Ataxia-free embryos out of the five you were able to test, but that’s ok! You only need one fertilized egg to form a baby! The other healthy one was frozen as a “backup” in case your first pregnancy failed, but now you can discard it OR donate it to a research lab OR put it up for “adoption” OR pay for another implantation to try for a sibling!

Except that NOW some strangers decided that the doctor isn’t allowed to discard ANY  fertilized egg for ANY reason. So it looks like you also get those three mutated clumps of cells, too! And most labs don’t allow unhealthy embryos to be donated or adopted, so I guess your only option is to keep them frozen (about $600 per egg per year) until you’re forced to try being pregnant again three more times ($8,000 per implantation).

Too bad that wasn’t even a factor to consider when you started.

Technically, Ataxia does not affect pregnancy, there’s just a good chance symptom progression will speed up afterward. Four times, in this case. Think independent to cane to rollator to wheelchair.

For many PGD parents, the chance to end the continuation of the disease for all future family generations makes the risk worth it… but that wouldn’t happen here, soooo nope. You have no other choice. This case does not qualify for an abortion. It’s dangerous, for you, but not life-threatening during the pregnancy.

The idea that “every fertilized egg deserves a chance to live” kind of goes against this whole PGD process… There’s a very real chance of it being entirely eliminated in some states. Pieces of the IVF system are already being changed because of the Roe v. Wade overturn.

I swear I’m not making this up just to dramatically try to prove a point. I promise it’s a genuine concern. A quick Google Search will give you hundreds of articles validating and supporting these claims.

And, before you tell me “people with hereditary diseases shouldn’t be having kids anyway,” PLEASE go read my two blog posts about that. And then go eat sand, kick rocks, and chase cars. Thanks.

I would never ask you to denounce any part of your religion. I’m not asking you to campaign for Biden, or donate to Planned Parenthood.

I’m asking you to stop supporting things without considering the consequences. I need you to advocate for WOMAN’S RIGHTS. I want you to understand that YOUR belief jeopardizes MY ability to have a family.

Changing your stance is definitely a strength, not a weakness. Especially if it’s based on fact and not opinion.

Remember, laws affect everyone, not just the cases your morals coincide with.