Hello, everyone. So with Coronavirus happening, our initial steps to add to our little family were postponed until now.
Since we’ve last posted, I’ve had an MRI and we found out I have a minor case of Schizencephaly. Schizencephaly is a developmental birth defect that is characterized by abnormal slits or clefts in the cerebral hemispheres of the brain.
I have added a photo of a severe case below so you can see what I mean.
We were already going to do genetic testing to make sure I don’t pass anything on to a child I carry, but this presented a new list of obstacles.
I talked with our genetic counselor and there are 2 additional tests, besides the general carrier testing that conventional couples do, that I can take. From what I understood, one looks at my chromosomes and looks for anything missing or anything extra. From there, the 2nd test tests for any brain malformations that are genetic and potentially passable.
Here’s the catch. Schizencephaly is rare. 1 out of 65,000 people are born with it, and the majority of them are just because they developed differently in the womb and there is no genetic reason. So only a fraction of people with Schizencephaly have the genetic form. So the cause of Schizencephaly isn’t known.
We could go through all this testing and either get all the answers… or none of the answers.
Which puts me in a very emotional place. Spend thousands of dollars to have tests that might not even give me answers. Or do nothing and either get pregnant, or not get pregnant out of “just in case”.
Everyone keeps asking me if I’m able to take care of an infant (whether it’s disabled or not) if Becca wasn’t home. The other question I keep getting is, “pregnancy is hard for a normal woman, can you handle it?”
I’ve been crying about it for weeks. My entire life has been me adapting and making things work. Why would this situation be any different? If the tests come back that there’s nothing they can see that would pass on to a child then I’m going to get pregnant. I know it will be hard, and painful, and test my body’s limits every day. But it will be worth it.
Becca has been wonderfully and beautifully supportive throughout all of this and I know I have the right partner by my side. I am capable. And I will be a mother no matter how we are able to have a family. But I’m not giving up on myself just yet.