“Why did you want to have a baby so much?”
“Why put yourself through that kind of risk?”
“Why are you risking the health of your baby?”

These are questions I’ve been asked, between this pregnancy and my last. On one hand, these are valid questions, questions that I anticipated getting and tried to prepare for. On the other hand, they’re frustrating because MOST women are not asked to justify their pregnancies, so why should I have to (which will be a post for a later date)?

Nonetheless, I decided that these are questions worth answering, at least for the sake of being totally open. I hope my thought process (and I say mine because I do not want to speak for my husband, who may have arrived at the same conclusions through a different route) will help others struggling with the same decision and at least promote tolerance for people who make the choice that Mark and I have made.

Note: This is me talking about MY experience. I am in NO WAY judging anyone else who could not or decided not to have children. MY decision is just that – mine – and it may not be right for someone else.

I could just say, in response, “we had a baby because we wanted to,” but that’s so incomplete. On one hand, some women just have an urge to procreate. Yes, many men want kids, but I think this NEED to have a baby is unique to women, in a way that I can’t explain. Not all women feel this need, and that’s just fine, but I did. I desperately wanted the opportunity to experience pregnancy, if I knew that it would be reasonable for me to do so. Is that selfish? I wondered that sometimes. But I also think that motherhood, however you come by it, is one of the most selflLESS things a woman can do, so maybe wanting to be pregnant isn’t so bad.
Mark and I are both very research-focused people. I spent a couple of years doing my homework before we decided to try to get pregnant the first time, and then I did more before trying for this baby. If I REALLY thought there was a serious risk to my health, I wouldn’t be pregnant. I know the statistics are on my side (the chances for complications are VERY small), and if something does go wrong, it was meant to be. I could have a spontaneous, massive aortic dissection from being pregnant and die, it’s true. And today, on the way home from an appointment, the car next to me had its tires spontaneously catch fire. The driver began to spin out of control, crossed into our lane, and hit the wall before bouncing off it and stopping not far in front of me. So, he could have hit and killed me today.

If we live our lives in fear of the far-out what-ifs, we miss out on a lot.

I remember a passionate Internet debate about having children knowing there was a 50% chance they’d inherit Marfan. Words like selfish and sin were tossed around. The conversations stuck with me for a long time. How could my future spouse and I choosing to have a baby be a sin?

I don’t talk about my religion a lot, but I think it’s impossible to explain the rest of thought process without mentioning a few of my beliefs. I believe that no matter how “good” we are, we’re going to have challenges. I believe our purpose here is to learn and grow and experience things and make decisions and eventually return to God and say this is what I did with the time you gave me. I believe if we ask, God will help us make our important decisions. And I know that ultimately, things work out.
So when I considered having a child with Marfan syndrome, I thought a lot about my beliefs. And here’s the thing. I can’t control a lot of factors. Even if I used pre-implantation genetic diagnosis to ensure I didn’t have a baby with Marfan, who knows if I’d have a healthy baby? My mom struck out 3 for 3 on having totally healthy kids (all different illnesses, by the way). My husband was diagnosed with two chronic illnesses as an adult. One of my friends adopted a child who, it turned out, had Marfan. Life has no guarantees.

Here’s what I can control. I can try to be an awesome mom. I can provide a safe, happy environment for my children. I know a LOT about Marfan syndrome. If this child has Marfan, I can provide him/her access to the best doctors, the latest research, and a community so close-knit I call them my family. I can love this baby for who they are: a gift that we have been entrusted with.

Are my decisions perfect? I don’t know. But whenever I doubt, I remember what Mark told me when I was pregnant with Menininho: there are no perfect parents, just perfect love.

It’s hard to argue with love.