eSCAping Type 1

Over the weekend, I presented during the Family Planning session of NAF’s Annual Ataxia Conference. 

The video is currently available on the conference website, and I highly encourage AAC attendees to watch it since it also includes presentations from a Doctor/Professor of Pediatrics, Neurology, Neuroscience, and Molecular & Human Genetics, a certified Prenatal Genetic Counselor, and another Ataxian who has also gone through the IVF/PGD process.

But for those who don’t have access (or for those who watched it but can’t understand my Ataxia-mumble-speech), here’s my part below!

Hi, I’m Meg, and I was diagnosed with Spinocerebellar Ataxia Type 1 in 2015.

My husband & I always wanted a baby, so in 2017 we met with my neurologist to discuss our options & decided if there was a chance for me to be pregnant with a healthy baby that we conceived, we wanted that experience.

So, she recommended a fertility doctor who explained IVF & PGD, and then once we got approval from the High-Risk Perinatal Team he recommended, we got started!

So in 2018 we began IVF, which is common in that if you Google it, you will find a TON of information and support… so do that.

But basically, my husband gave me shots at home for two weeks to increase the amount of eggs I’d release, and then those were removed and combined with his sperm to create embryos, which were then sent for genetic testing.

Now, it’s normal for any of these steps to not work, and then you’d have to start over. Please keep in mind that IVF is amazing, but not a guarantee.

For example, I released 24 eggs, and only four embryos were “good enough” for genetic testing.

Now, for PGT, the company we went through created a personal test using saliva from me, my husband, and my mom, so they could compare the embryo DNA to ours to find matches. 

So, you can only do PGT if you’ve had genetic testing yourself & you have a hereditary disease to test for.

For us, out of the four embryos we tested, only one did not have SCA1.

So, they implanted our ONE healthy embryo and I had a very normal pregnancy! I was seen by that High-Risk Perinatal Team, which basically meant a lot of doctors and a lot of appointments.

Ataxia made the third trimester very difficult since I really couldn’t move. If you plan on getting pregnant, make sure you have a support system set up, because you’re going to need help with absolutely everything.

After a pretty normal pregnancy, I had a pretty normal delivery.

I was really nervous about not being able to push & getting tired easily, so I did have a medical team kind of ready for anything… but there were no complications.

So, basically, Ataxia does not at all prevent you from having a baby.

And now we have a 1-year-old! 

Being a parent with Ataxia is difficult, but worth it. I have a different family member come over every single day to help me while my husband is at work. 

My son is super energetic and happy and I could not raise him alone, so I’m glad I don’t have to.

In conclusion, here are my three pieces of advice:

1. Start now. Even if you’re not ready for a baby yet… It took me three years, and that was with everything working perfectly.
2. Find a support team. You can definitely do this, but not by yourself. You’re going to need help. Start by looking into our Facebook group – Parenting with Ataxia.
3. This process can be wonderful or heartbreaking. It’s stressful and expensive and consuming. So, be mentally prepared for everything, because you really don’t know what to expect.