I’d be lying if I said I didn’t have equal amounts of both warm/fuzzies and terror/anxiety. In so many ways this little blessing was exactly that - something we didn’t know we needed. The timing wasn’t perfect… but it wasn’t not perfect. Sure I would’ve liked to drink wine and limoncello every day when we went to Sicily but that’s besides the point.
I’m writing this post because it’s what I needed to read and couldn’t find. We had some scary tests, some scary results, and a lot of days that I just couldn’t feel happy. I placed an insurmountable amount of pressure on myself; to be excited, to be learned, to be strong. I didn’t feel any of these things and some days I still don’t. I couldn’t (and still don’t) have the app on my phone that tells me what size fruit my baby is. Because below that little fact are thousands of women chatting about how you probably shouldn’t risk having vanilla extract because there’s alcohol in it. It’s overwhelm on another level. So here’s our story, because it wasn’t rainbows, butterflies and swooning over ultrasound photos. And if you’re going through something similar, I hope it helps to know you’re not alone. I felt isolated and misunderstood, and if I can help one woman push away those feelings even just 1% then it’s worth sharing.
Years ago, when I was in college, my Mom let me in on a secret. She had a chromosomal abnormality which caused two miscarriages in between me and my brother. They discovered this abnormality during an amniocentesis when she was pregnant with Joe, so she also knew that he had inherited it too. But, I had never been tested. A whispy little cloud floated over me for years knowing that I should get tested because I did want babies one day, but honestly I was scared of the results. I successfully convinced myself it was because I hated getting blood drawn.
Without explaining the details, if you have this very rare and random abnormality you are actually perfectly healthy. There are no risks or detriments to your health. However, when you want to get pregnant, the stats look like this: 25% chance your baby is totally normal with no abnormality, 25% chance your baby inherits your abnormality but they grow up to be healthy like you, and 50% your abnormality causes a serious complication that leads to miscarriage or ridiculously rare chromosomal disorders. So that basically stacks up to a 50/50 chance of bringing a pregnancy to term.
Fast forward to this past August when we found out we were pregnant. I’ll spare you the emotional roller coaster details. In less then a month we were headed to Sicily for two weeks. Cue me crying on the phone to the doctor’s office saying I don’t care if I’m too early to see the doctor, I need to come in before we leave the country. PS - who knew you usually wait SO LONG before your first appointment, am I the only person who wanted a professional’s confirmation that there was a human gestating inside me? Anyway, I still hadn’t gotten the chromosome test done. Successfully securing a pity appointment, many vials of blood and an ice cream cone reward later, we had to wait until we got home from our trip for the results.
Well in case you didn’t guess I have the abnormality. From the start I didn’t want to tell a soul about our news; it felt like the most private piece of information I’d ever held. Getting these results only intensified that feeling of needing to protect myself. I compartmentalized hard. I couldn’t let myself get attached to something that may never be, and I couldn’t bear to tell our families with such a huge risk at stake. Oh I also tested positive for the carrier gene of spinal muscular atrophy. Luckily Mike tested negative but just add it to the reasons I couldn’t sleep at night. With every passing week I didn’t miscarry, the 50/50 chance weighed heavier in our favor. But, to know for sure if our baby had inherited the abnormality - or worse, developed another disorder because of it - we decided to get an amniocentesis at 18 weeks. It was an immediate decision and I’m grateful that Mike and I were on the same page. We barely talked about it. If the baby had developed one of these rare chromosomal disorders it would be a risk to my health to carry out the pregnancy. That was something I needed to know. While it seemed that the doctors at my office were taking a wait and see approach in terms of offering options and information, I was thankful when one of my doctors told me their practice is pro choice. If we got the worst possible news, they would actually advise against bringing the pregnancy to term. That’s difficult to write but very, very real.
In between then and the procedure, we told our immediate family which ballooned into most of our family and some friends. It was harder for me than it was joyous. Everyone was happy but I was still very much afraid. People wanting to spread the good news made me feel like they weren’t respecting my privacy. Everyone asked how I felt physically, but very few people thought to ask how I felt mentally. It felt like no one understood the weight of the situation. I honestly hated telling people and I still feel guilty for that. I said many times that I wish there was a 9 month retreat for pregnant women to come to term in peace and quiet and sunshine.
Try looking up “why I got an amniocentesis” to find encouraging happy stories of women who chose this path and were happy with their decision. Guess what you’ll find? Thousands of strong opinions, articles, and blog posts completely blowing the risk of the procedure out of proportion. As my doctor put it, the risk of miscarrying after an amniocentesis is about 1% - but there’s no way to factor out things like women who would have miscarried because of other reasons anyway or inexperienced doctors or residents performing the procedure. In my doctor’s office alone, there were two nurses, an OB, and a doctor’s wife who got amnios with at least one of their pregnancies. That’s more than half the people I even come in contact with at that office. The doctor’s wife actually got a simultaneous double amnio because she was due with twins. And those are just the people who told me about it. It gave me major solace that all of these medical professionals weighed the risk vs reward the same way I had, even if the internet (and many people in person) told me differently.
It was actually astonishing the amount of people who said “well I just would never take the risk”, as if I was making an ill-informed or irresponsible decision. As if having to make the decision wasn’t hard enough. So by the way, if you’re reading this and know someone who is going through something similar - be extra gentle with them. If you care about them, support their decisions. Even if you disagree. I honestly wish we hadn’t told anyone until after we received the results. There were very few people who helped instead of hurt. And it was not for lack of trying, I knew our close friends and family were trying to be there for me. But they were also overjoyed and it was extremely difficult to not be able to truly share that joy with them. I tried, but I just couldn’t find it.
The procedure went perfectly fine. There’s an ultrasound tech watching your little one the whole time. They insert a fairly large needle into your womb to pull out a few vials of amniotic fluid. It feels exactly how it sounds like it would feel. Not incredibly painful, but very uncomfortable and literally draining. Unbeknownst to me I also needed an additional injection because of my negative blood type. I was so tense when it was over I told the nurse I needed a breather before she put another needle in me. I was alone and I’m not going to sugar coat it, I had an anxiety attack. Mike couldn’t be there but I pretended he was. I pictured him cupping my face in his hands and telling me to breathe, the way he has in the past when I’ve had attacks. I was nervous about the needle and the procedure but the emotional intensity was what actually kicked my ass. Knowing definitively whether my baby was healthy or not was actually within reach and that was more scary than it was comforting.
A few days before Christmas I stood and cried in the middle of the market on Arthur Avenue when I got the news that our little bean beat the odds and was completely, totally perfect; no abnormalities. I hugged my brother who said “also, there’s a Jonas Brother behind you”. Which was true - shoutout to Kevin. I called Mike who wanted to know the sex… well I’d forgotten to ask that. I was preoccupied. When I saw him later that night it turns out that he’d known for weeks that it was a boy. He knew I didn’t want to know until we got good & healthy news. He had glanced at my file during my last ultrasound appointment… he said it was an “accident”.
So it’s true and real now. It’s onto planning showers and designing a nursery. To cooing over little baby hats and picking a crib. I’m sharing in the excitement with those around me that we are starting a family. It’s not the 2019 we pictured at this time last year. But when you make plans, God laughs.
If you are struggling with infertility, pregnancy complications, or anything similar - I see you. Whatever you are feeling - or not feeling - is okay.