I did not want to post this entry.
Eager though I am to share embarrassing stories with friends and strangers in the name of entertainment, make a fool out of myself for the education of my students, or else often times immaturely seek the attention of whatever room I inhabit, I desperately and at all costs avoid vulnerability.
To me, vulnerability is feeling emotions beyond one’s control in the presence of others. It is for this reason I so obviously dreaded and suffered through my beautiful, precious, one wedding day, when hundreds were witness to my happiness (which I felt should have been private), my nervousness, and sheer feelings of being overwhelmed. It is why I allowed no one but my husband in the delivery room during my hardest moments of labor. It is why I avoid difficult goodbyes like the plague, I don’t know what to do when people cry and why I make jokes in moments of discomfort: anything to avoid revealing raw emotions in front of another person, regardless of the nature of the emotion.
And so, despite my terror, confusion, and uncertainty all tinged with a strange, elusive happiness, I will begrudgingly share this story with you because I have decided the situation is much bigger than the way I feel about it.
Yesterday, Monday, Koby, Knox, and I visited Abilene for our anatomical (read: gender-revealing) sonogram to find out that we were going tot be blessed with another beautiful boy. What happened next did not unmake the blessing, but it rather did change it in an unexpected way.
The usual prenatal sonogram specialist was away on vacation in Italy, and so a covering doctor came in to visit us after the tech showed us our son’s various body parts including, but not limited to one creepy-yet-oh-so-lovable alien face, a round little belly, and criss-crossed feet. Hey baby! I did note that the tech paid what seemed like a longer-than-last-time amount of attention to (what to me looked like) the top of the head. Nothing too alarming- I know doctors are always checking the sizes of babies’ heads.
The doctor came in that dark and small room, made a few conversational jokes and then settled down to business. He started, in what I considered weird fashion, by talking about my baby’s brain. He continued on for at least one full minute while I considered that he was a good deal more thorough than most doctors, when I realized that he was explaining something that was abnormal on our sonogram. On our baby. And it occurred to me that the less time you spend in the small, dark room, the better.
In that minute I heard three stupid words that have consumed my life since- choroid plexus cyst. Because I could now successfully write a research paper over these “normal” abnormalities, let me attempt to succinctly fill you in on their meaning. Essentially, the choroid plexus cyst (CPC) is not a cyst at all, but more like a pinched-off pocket or blister of cerebral fluid that shows up in about 1-3% of prenatal ultrasounds, almost always goes away by the third trimester and ultimately means nothing whatsoever. They can be unilateral (on one side) or bilateral (on two sides) and can range in size but do not affect the brain or its processes in any known way.
For something so harmless, as I understood them to be after my two-minute crash course (definition bolstered now by countless resources), I wondered why this doctor was telling us at all, and I was about to write it off when he continued that there is a slight link between CPCs and Trisomy 18, which is a chromosome abnormality.
You know of Trisomy 21, you probably just don’t recognize that particular chromosome abnormality as that name. You know it as Down Syndrome. In addition to a mild association with Trisomy 18, CPCs are also linked to Trisomy 13 and 21. Trisomy 13 and 18 are both abnormalities that doctors describe as not “compatible with life”, meaning that most T13 and 18 babies are stillborn or perish before their first birthday. But I’m back in the tiny dark room, and I don’t know that yet. But I can remember reading about T13 and 18 during my last pregnancy, and I can remember that they are very, very bad.
Our doctor was careful to tell us that T18 (the abnormality to which CPCs seem to be most linked) is a very rare condition, affecting only about one birth in every 3,000. Having CPCs show up on an ultrasound doesn’t mean that the baby does indeed have T18, but the odds increase to something like 1 in 400, solely because of the cysts’ existence.
One in 400 doesn’t sound like terrible odds – but it does sound scary in a tiny dark room when all you’ve ever known is the “Looks perfect!” sonogram and monster kicks and healthy, fat babies.
And so the doctor continued- CPCs are considered a “soft-marker” (like signs) for abnormalities like T13, 18, and 21. None of the other soft-markers were seen during our son’s ultrasound, meaning we have what is called an “isolated choroid plexus cyst”, and upon checking the hands, feet, heart, and stomach of our little baby, the doctor reiterated that our chances were very low for having a baby with Trisomy 18 because all looked fine. Tell-tale signs of T18 that are almost always caught during a sonogram include clenched hands, “rocker-bottom” feet, and heart defects. We left the office feeling blind-sided by the news and overwhelmed by both our emotions and poor, tortured 11 month-old Knox, who had waited with us the two hours it had taken just to get in to the tiny, dark room.
My perception of basically everything changed. The mind: it goes to a dark place when confronted with news like this. I felt joy- a boy! Like Knox, how sweet. Brothers! A choroid plexus cyst? How dare this mar my pleasure at having a new son growing in my body. My body… Had I done something to cause this?
We rushed to our OBGYN appointment which was scheduled that afternoon, as we now live one hour and forty minutes away from our hospital. The sonogram doctor had called ahead to catch our doctor up to speed- CPCs, two parents who seem to be taking it well, to be holding it together, not freaking out… My doctor basically reiterated the knowledge that I had so recently taken in to my own brain (which may have CPCs of its own, did you know? So could yours. They’re that harmless.). She was even more emphatic that this is
Most likely nothing, based on my age (26) and the isolation of those CPCs. An option for me, she continued as all doctors must do, would be to take the quad screen test, which I had opted out of for both pregnancies. This screen is a blood test that does not detect chromosome abnormalities in the fetus, but rather measures different chemicals in the Mother’s blood, and based on the findings, comes up with likelihood of the baby having an open neural tube defect or abnormality. The findings have occurrences of false positives five percent of the time, meaning that in reality nothing is wrong, but the test indicates that there may be. The screen “catches” things like Down syndrome 85% of the time, meaning that in 15% of the cases when the test indicates that nothing is wrong, in reality there is.
More information that I’d already gotten but thought I’d never need, but now applied to me: amniocentesis testing follows the quad, if you want. This is an invasive test that will tell for certain if the baby has an abnormality, but comes with anywhere between a 1 in 200 to 1 in 500 chance of spontaneous miscarriage, regardless of the baby’s health. Doctor continues, and if I need to make a decision about continuing the pregnancy, I will need to begin the testing process now, because I am approaching 19 weeks… Amniocentesis, termination. These are the things my doctor is telling me while I’m trying to ignore my mashed-potato-covered baby who’s grunting and crawling all over my husband and meanwhile wondering what’s going on with the baby still in my belly…
It was hard to make a decision. For Koby and me, the amniocentesis test and termination were and are off the table, they’re unspoken, non-options that don’t really exist in our vision for what’s next. And the quad test- that wasn’t really in my scope of reality yesterday either. Maybe the one true time I would accept ignorance in favor of something else. But, our reality changed in the span of two minutes and in the space of two millimeters of a brain cyst, so today I took the blood screen.
I get the results from the screen in one week, and we are scheduled for another check up and a level 2 sonogram in four weeks. It’s frustrating to know that even if the CPCs are gone, the link with the chromosome abnormalities isn’t eradicated. I debated on sharing this at all since it is likely that nothing is wrong, but because we can now basically not count on the “all-clear”, I thought I should share rather than bear it privately, which would probably be my instinct. We will just have to pray for continued, on-target growth, no more soft markers, and an inexplicable peace that while not guaranteed, these things mean that everything is fine. Or else pray for the preparation in our hearts and lives for what’s coming.
I know that the results from the blood screen, which could be at best an unreliable source of comfort, could be wrong, but I want to start the journey to be the absolute MOST prepared I can possibly be for my baby. I know that I did nothing to cause and can do nothing to change my baby having or not having a chromosome abnormality, and so some would have advised me not to take the test. But I feel I can change my level of preparation, of readiness, of peace, and that it will all have a positive impact on my son.
I know that in all likelihood, there is nothing wrong with my baby -a less than 1% chance, in fact- and that I will likely deliver another healthy son. But I’ve told you of the dark places to which a worried mind will lead you, and so in the midst of planning for my son’s nursery, I find myself wondering if I will ever be able to bring him home to see it.
And I hate that.
I also know that I hate posting this because it is an unfurling of my fear, my sickest doubts, and what may he completely unnecessary grief. I know that not everyone feels the need to share emotions like these, as I usually don’t, but I also know that today I have read and been encouraged by so many women who have gone through or are going through similar situations an it helped me. I found myself hungering for more posts to read from moms cleared of the T18 diagnosis and even those living with a child with the trisomy or who had lost one because of it. And so, though I know most will not have read all these words, if you are and this is happening in your life, this post is for you.
But of it all, probably the thing I hate the very most, is the fact that I hate so many things on the day after I found out that our new baby is a boy. I hate that you’re reading about my fear instead of seeing cute and clever pictures proclaiming BOY! because I’ve been too dumbfounded to take any. I hate that my concerns and needs to feel informed have tainted even a bit of the joy, of this time of getting to know more about my baby, and I wonder and preemptively hate how often something similar will happen in the future.
I’m sorry if we are friends or family and you are finding out about our little boy this way- I’ve told very few people because I just don’t feel like talking about it much (ironic though it is that u filled up 11 pages of handwritten paper in preparation for this post). Please don’t be worried and do know that the odds are heavily in our little guy’s favor to be healthy and strong.
Please keep praying for us, and I promise go be a better blogger and post frequently. And if you found this because you, too have now googled every combination of the words “choroid plexus cyst” and “Trisomy 18” and any other jargon you now wish you never knew, please read and feel that when all hope seems lost, rotted and withered, you can stand firm and count on God’s perfect ruling to prevail. (Habakkuk 3:17-19)