So, let me just start this off by saying that we are now totally relaxed about the adventure I'm about to describe. We are very optimistic about having healthy babies and trusting God in the event we don't (OK, trying to trust God even if we do, but that's a continual struggle). We are also learning some lessons about parenting and worry that we will probably continue to learn for another 40 years...
This all started one fine Monday morning with another doctor's appointment. Since I am borderline advanced maternal age (AMA)--2 months shy of 35 on the babies' "due date", the docs want me to do some extra testing. It's still weird to me to call it their due date because we all know that they will be due much earlier than that, but I digress. This appointment was with a specialist who was going to perform an NT scan. For all the readers who are not AMA moms, apparently the measurement of a fold in the neck of a fetus (embryo? I can't ever remember which one we've got at this point) has a high correlation to risk for genetic abnormalities (Down Syndrome, Tri-something 18, something else that causes male infertility, etc.). Obviously, if you're looking for technical information or more details, you'll need to do some google research. So, the way I understand it works, they take your age and family history and you have a baseline risk factor. Essentially, your chances that your baby will have a genetic problem. Then, they measure this tiny little space on the neck of your baby(ies) and take your blood to look for something and take the age of the baby(ies) and throw it into a formula along with your age and family history, compare all your numbers to thousands upon thousands of other moms and their stats and spit out a new risk factor. Got it?
OK, so I start my Monday morning with genetic counseling, which was essentially trying to explain to a non-medical person all that stuff above and then taking my family history. I did get some insight into whether certain conditions of various family members (cancer, diabetes, seizures, etc.) might run in the family or not, which was interesting and nothing too worrisome, since it's mostly guesswork anyway. I was told that my baseline risk for a genetic abnormality was 1 in 120 something (or maybe 140 something, now I can't remember). In any case, I accepted that that's the risk for women my age and still feel young, so wasn't too worried about that number.
Next, I shuttle off to the maternal fetal specialist (no clue really what that means, but she did have super cool equipment for a snazzy ultrasound and is supposed to be really good at measuring this little fold in the neck). I was totally entranced looking at the little guys who were looking less like tadpoles and more like little people. Their heads were still disproportionately large, but I could start seeing features, it's just really amazing technology, right? In any case, doc and I are talking about how she wants me to stop doing everything, no walking, park close to everything, etc. I told her one of my docs said to spend an hour lying on my left side starting at 12 weeks, her response, I don't know how he expects a lawyer to do that! Then she proceeds to tell me that I should try to start working from home at 24 weeks. Like that's easy to do! In any case, all is going well until she starts bumping my belly. One of the little guys wasn't moving much, so I asked her if that was a problem, she says no, but she was trying to get the baby to reposition so she could remeasure the neck. Uh oh. She then says, she's tried and tried, but it looks like one of the little ones is in the range for increased risk of a genetic abnormality. You want the folds to be under 2.5. Baby A measured 1.1 and Baby B measured 2.5. That's when I fell apart. Tears started rolling before I even had the slightest clue what I was upset about. I suppose it's my first mom experience that something might not be perfect. Doc told me that she wouldn't be surprised if the blood test came back abnormal. More tears. She said we should consider whether or not we want to have an amnio done (google it, I can't even get close to adequately explaining). But, no matter what, we should consider something like an echocardiogram to have a cardiologist look at the heart development after 19 weeks. That's apparently a side effect of Down Syndrome and something we could possibly need to plan for (surgery in utero, specialists at the birth, etc.). More tears. Brain on overload.
Somehow, I manage to schedule a followup, walk out, and drive home safely. Hubby has been great and attended just about every single doc appointment I've had, but he had a meeting, so I told him not to worry, it's just another appointment, etc. Yeah. Hubby left work immediately and met me at the house when I called in tears. I called work to say I wasn't coming in, and planned on learning everything I could about what had just happened and what it really meant. After about 3 minutes on the internet, I crashed. Slept all day. More emotions than my overworked (I'm growing two babies, after all!) body could handle.
Longest post, ever...
All kinds of questions ran through my head: since we're having twins, does the fact that one is low mean my normal is low and the other is certain to have a problem, sort of like a control group? if the high one has something really bad that means it doesn't survive to term, what does that mean for the other one? why did we go through all this trouble to get preggo if we're just going to have a special needs child, should we have just adopted? it went downhill from there. After a nap and getting a grip, we knew we needed to wait until we got the results from the blood test and the formal assessment of risk. No matter what it said, none of this is a positive diagnosis. We could have 1 in 3 risk and be 1 of the 2. Or, we could have 1 in 7,000,000 risk and be the one.
My regular doc called on Thursday (incidentally, right after I prayed with my pastor who had given me sage advice and much reassurance) to tell me that he just got the results of my tests and that Baby A has 1 in 6,000 chance of Down Syndrome and Baby B has 1 in 330, right around my baseline, which is 1 in 312. Woo hoo! 1 in 330 sounds great! Particularly when you fear much worse. But, what? I was told my baseline was 1 in 140 something? Paper shuffling, doc responds, I don't know why anyone told you that, it says here 1 in 312. Huh? And, even more importantly, the risk for the other genetic issues (the scary ones), is very slim.
So, where are we now? I still don't exactly understand all of this, but decided to go with the 1 in 330 number, which incidentally puts me just over the risk where they "officially" recommend an amnio. So, no amnio and hope for the best. We might still do the cardio thing, since a heart problem would require some extra intervention. But, after hearing that the risk for the scary genetic problems is really low, we're not as concerned about Down Syndrome and know these babies will be a blessing to us and many others. I think we just got our first lesson of many about worrying about our kiddos. I've been told it doesn't stop, even when they've grown up, clothe and feed themselves, get married, get a good job, and on and on. Why did we sign up for this???
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