The week between our U/S and our high risk OB appointment was excruciating for me. I just wanted to know what was happening with the little boy who already meant so much to me. As soon as I got home, I consulted Dr. Google, figuring “I’m an educated health care professional. I can wade through the BS and figure out what is happening with my baby.” WORST IDEA EVER. I woke up in the middle of the night once that week, and went into the nursery, and clutched the glo-worm that a co-worker had bought for us while I lay on the floor wailing. I immediately repented for every time I went out at night as a teenager and didn’t call my mother. I begged God to forgive me for calling my dad crazy when he left me four voicemails to make sure I was okay after a major disaster in the city where I went to college. I knew the anxiety and the love the accompanied being a parent now. I started crying daily in the shower just to let it out, because it was before Hubby woke up for work and I thought he couldn’t hear me. He could, and it even woke him up. But I couldn’t not cry. I was sure my baby had T13 or T18, which had a very low chance of survival to term, and even lower for survival past the 1 year mark. I asked myself which would be worse: a stillbirth, or losing a child in infancy? I never did give myself an answer. I cried instead.
I called the OB office for our quad screen results, and the dingbat medical assistant told me the following: “They’re normal.” And when I asked for specifics, she didn’t even know how to tell me anything else in a meaningful way. She just read out numbers, without units or interpretations. She said they would tell me at high-risk. Awesome, because I can’t think of anything I would rather do than wait to find out the results.
Hubby and I discussed, frequently, what the plan would be if they offered us the amniocentesis. I couldn’t decide if I was one of those moms who would rather be able to plan, or an “ignorance is bliss” type. I couldn’t get the risk of miscarriage with amniocentesis out of my head. I think deep down my husband really preferred to know, but he knew how riddled with guilt I would feel if I were to choose amniocentesis and then have a horrible outcome. So our united front response was, “no, thank you.”
We walked in as stealthily as possible to try to avoid seeing any colleagues. We were called back to an ultrasound room, where the technician squirted me with the wretched jelly and started the scan. She measured size, confirmed that he was a he and started focusing in on the head and neck. For what seemed like forever. Especially the head. When she was done, she printed some pictures for us and said she would send the doctor. A few minutes later, in walked the giant man that I will heretofore refer to as the Giant Tool. He was not alone. He introduced the genetic counselor, and I’m sure my face turned as white as a sheet. I knew it.
They said they did see the thickened nuchal fold again, but didn’t see the choroid plexus cysts that were picked up at the OB’s office. I immediately perked up—This is Good News! My original OB said if they only saw one and not the other, they wouldn’t be particularly concerned! Then I thought, “so why is She here??” The genetic counselor asked for my quad screen results, and read them looking puzzled. She handed them to Giant Tool, who looked quizzically back at her, and then at me. I told him we only just had the screen done the previous week if that made any difference, and he made some surprised comment about not having it done at the first appointment. The conversation went something like this (acting like we weren’t present at all):
Giant Tool (GT): “I think the baby has Down syndrome.”
Genetic Counselor (GC): “But the screen results are 1:4700, less than the general population.”
GT: “It’s just because of her age. Do you see how high that HCG is?”
GC: “You really think so? I don’t know. What about the long bones?”
GT: “Today’s U/S says they’re in the target range.”
GC: “I don’t think it’s Down syndrome.”
**me, in my head, while watching them talk like a cat watches a ping-pong game: why didn’t they have this conversation in his office before walking in here???**
GT started talking to Hubby and me again:
GT: I think you should have an amnio. It is the only way to know for sure, and we can do it today.
Me: No, thank you, we have no intention of terminating regardless of the result.
GT: You’ll have peace of mind, and you’ll be better off with time to prepare.
Me: We don’t feel comfortable with the risk of miscarriage.
GT: Well, the risk you read about is in the general population of providers. I do these every single day, and have for the past 15 years. The risk of miscarriage if I do it is about 1 in 10,000. And with your sac where it is, I would say even less than that. If we don’t do it today, we can’t do it again until 34 weeks. NOW LET’S SEE WHAT’S WRONG WITH YOUR BABY.
**screeeeeeeeeeeeeech…the whole world came to a grinding halt.**
Me: I don’t think so. What are our other options? **internal monologue: and what’s this I hear that you have a partner? Can we see him next time, instead??**
In the end we opted against the amnio, and decided instead to follow the baby with monthly appointments and U/S. We still had to see Giant Tool. The genetic counselor was nice enough. She explained what GT didn’t, including why they disagreed, and tried her best to cover for his rude behavior. She explained that the baby didn’t just have a little extra thickness of the nuchal fold, but actually a cystic hygroma, which could potentially progress to fetal hydrops (fetal heart failure, which could include fluid build-up surrounding the internal organs or other important tissues). She told us that it could get better, or get worse, and that if it got worse then he had an increased risk of dying before or shortly after birth. If it got better, it didn’t necessarily mean that he had a lower chance of having a chromosomal abnormality, just a lower chance of dying from the complication of fetal hydrops.
The one up-side, was that we got to see our baby every month. At the next appointment, the U/S tech was enthused to try a new technique she recently had learned at a conference: 3D U/S of the heart. For being her guinea pig, she gave me some 3D shots of his face. I slept with them under my pillow.