Wednesday, April 15, 2009

A long post about Fig

A month ago I had the “big ultrasound”—the one where they check the baby for all kinds of things and tell you its sex if you want to know. Before the appointment, I was actually getting a little nervous because I realized that if there was something detectably wrong with the baby, that was the day I would find out. I had purposely elected not to do any type of genetic screening or testing prior to this, so other than seeing the initial blob-like ultrasound at 7.5 weeks and hearing the heartbeat at a couple other appointments, I really had no clue what was going on in there.

It seems like these days everybody gets all sorts of genetic screening done in the first trimester. And I think that’s fine—if that’s what people want to do, then do it. But for me, it just didn’t seem necessary. I trusted nature—if something was really, really wrong with the baby, then it just wouldn’t make it, and whatever else might go wrong, I could handle. A lot of people who get testing done say that the reason they want to do it is because if something is wrong, they want to know about it, so they can be prepared and know how to handle it. And again, that’s fine. People handle things in many different ways, and you should do what is best for you. But I get the feeling that that might not really be the reason why many people opt for testing. In all honesty, you don’t want to hear that there is something wrong with your baby, because in reality, what in the hell are you going to do to “prepare” yourself? I think people do it not so much to prepare themselves for the worst, but because they want some kind of tangible reassurance that their baby is fine. And there’s nothing wrong with that, seriously. Don’t get the idea that I am unfavorably judging anybody’s decision either way. I only walk in my own shoes, so I only know what is best for me in the here and now. I would never dream of questioning someone else’s decision, regarding someone else’s baby. It certainly isn’t my place. And believe me, I know how reassuring reassurance can be. Very, very early on, before Rob and I even told anyone I was pregnant, I had a bit of a mini-scare with Fig. The words “Hon, your baby is going to be fine” was the most welcome sentence I had ever heard.

One of the main reasons that I didn’t want any type of testing was because once I started getting so sick, I just had this very powerful sense that Fig was good and strong, and I honestly didn’t feel like I needed any type of screening or invasive procedure to confirm that. I just knew. But the other reason why I didn’t want any testing was because I had done a lot of research, and I know that these tests aren’t perfect. There are a lot of false positives out there. In some cases, maybe there really is something wrong with the baby, but a lot of the time, it's just an anomaly in the test. It seems like far too many women are told that they have some kind of ambiguous result—that maybe there is something horribly wrong with the baby—and then they spend the rest of their pregnancies under extreme stress. Or they have an amniocentesis, which may or may not confirm the suspicious diagnosis and that could (though rarely) lead to miscarrying what would have been a perfectly healthy baby. For me, personally, I just didn’t want to put myself through any of that. At all costs, I wanted to avoid stressing myself out, which can be so damaging to the fetus. So I chose to forego tests, and Rob was on board with that.

Which brings me back to “the big ultrasound” last month. It was one of those things where everything was going pretty well. We saw Fig squirming around, moving his/her arms and legs. We could see the bright spot of a heart as it beat. The technician took a lot of measurements, especially a lot of measurements of the head. I distinctly remember seeing some bright spots on Fig’s head as the technician zoomed in for a closer look at the brain. But I didn’t think anything of it. Ultrasound images are so grainy anyway, and I certainly didn’t know what’s supposed to be there and and what's not. Then it was over. The tech printed us out some pictures of Fig and smiled as she confirmed our impression that we had a cute baby in there.

And so we went on to my prenatal appointment. The midwife came in, asked how I was doing, etc, as per usual. And then she told us the news, kindly, apologetically, reassuringly. She said that the ultrasound had detected a few small choroid plexus cysts on the baby’s brain. She said that it was probably nothing. Most of the time it was nothing. About 1% of babies have these cysts between 16 and 24 weeks of gestation and in the vast majority of cases, they end up just going away. But sometimes, sometimes the presence of these cysts indicates that something is seriously wrong—namely Trisomy 18. What that means is that there is 3 copies of chromosome 18, and having the wrong number of chromosomes (with the exception of chromosome 21, which results in Down’s Syndrome), the fetus is non-viable. That means it would probably die in utero or just a few minutes/hours/days after birth. Most of the time when a baby does have Trisomy 18, there are many other indicators besides the choroid plexus cysts. Most of the time but not always. She said everything else on Fig’s body looked good, but legally, she had to tell me about the cysts and what they could mean. She suggested getting an AFP (alpha-fetoprotein) screen—just a simple blood test that can provide information about whether or not the baby had certain chromosomal abnormalities, such as Trisomy 18. And so even though I had been adamant about feeling that Fig was okay not wanting any tests, what could I do? I got my blood drawn.

After that, all we could do was wait. Wait for the AFP results to come back, wait till next month to have another ultrasound and check and see if the cysts are still there or if they have gone away. Wait to see if you’re going to lose this baby that you’ve thrown up 84 times for and seems like a part of you already. I came home and logged onto the UIUC library website. A quick PubMed search came up with thousands of research articles about choroid plexus cysts (CPC) and Trisomy 18. I read dozens of them. I pored through websites, finding that there is a Choroid Plexus Cyst support group for people in this same situation. The websites and research articles were, for the most part reassuring. The CPC support group linked to this article, which reified my position on unnecessary fetal screening (including ultrasounds!) and made me feel better. But in every peer-reviewed publication that I read, there were always a few anomalies… one or two random cases of a baby ending up with Trisomy 18 that had had no other problems detected except the CPCs. It was difficult being in limbo. And it was ironic—this type of stress was the very thing I had been so determined to avoid.

About a week later, I called the doctor’s office to check about my AFP screen. They told me that it was “negative” and that everything was “normal.” This was a good sign—a great sign—but I wondered, am I supposed to relax now? The AFP screen has only about a 60% detection rate for either Down’s or Trisomy 18. With 40% of cases remaining undetected, did that really mean I could breathe any easier?

And finally today. I had a follow-up ultrasound scheduled to check and see the status of the cysts. I tried to remain calm—afterall, I was armed with my battery of research and the negative AFP results—but still, I was pretty worked up this morning before the appointment. During the ultrasound, I knew what to look for this time, and I could see that there were no suspicious white splotches on the head at all. I didn’t ask the technician about any of this because I think that they are sometimes not legally allowed to make any comment, but she did tell me, “Everything is perfect.” When I saw my midwife afterwards, she came into the exam room with a smile on her face. “The cysts are gone!” she told me, and she handed me a print out of the ultrasound report, where she had hi-lighted the phrase “The CPC are not seen with this U/S.”

So there you have it. After a month of being on edge and dealing with the very drama I had specifically sought to avoid, my initial convictions—that Fig is okay—have been confirmed. All of this probably comes as news to most of our friends and family. We didn’t tell too many people what was going on because, for me at least, it was too difficult to even talk about. Plus, we didn’t see the point of putting everybody else through all this before we really knew what was going on. It was my hope that I could just write about it when all was said and done, and now here we are. Until Fig is born, of course, we still won’t really know if he/she is healthy—ultrasounds and genetic tests can’t detect everything. But from here on out, I’m just going to keep trusting my gut. Thanks for reading.


Anonymous said...

That's some pretty heavy stuff you've been carrying around with you.

Thank you for being strong!

Dear Fig:
We love you very much! Now Fig, this is your grandma talking... you be good to your mommy from here on out. She's been very strong for you, now it's your turn to be on your best behavior. Smooth sailing from now until August 21st!


Anonymous said...

Lis, thank you for sharing your concern and your joy!! Maybe you and Fig can go for a little fun run in the sunshine tomorrow. Many hugs, auntie

Anonymous said...

Just want you to know, how thrilled I am that everything looks good!!!!!!! It must feel so good for you and Rob to have this heavy weight lifted off of you. We all feel your pain and your happiness, thanks for sharing. Wishing you nothing but the best for the rest of the pregnancy
Love, Pat

Cathy said...

Sometimes it's good to not know things are wrong. I'm really happy that everything worked out for Fig in the end. I am glad we didn't know about Chris's problems, and we also opted to not find out if anything was cooking with Sam. I worried the whole 9 (10) months anyway. But carrying that burden around, all month, well, I wish I'd known so I could've prayed for you guys. Being in that limbo stinks.

Cathy said...

It's all downhill from here! (Except for the getting larger thing!)

Mrs. Mother said...

I'm glad you got good news. I'm one of the ones who didn't. My baby had Trisomy 18. I just wanted to correct one thing in your post. Amniocentesis are 99.98 percent accurate, so an amnio will concretely rule out any kind of genetic problem.

Again, I'm really glad you got good news.

Sandra Cookie said...

Melissa, I'm glad the cysts disappeared. I wish you a very healthy pregnancy! ~Sandra