Since the beginning of the year, Abby and I have been on a roller coaster with medical procedures, exams, and emotions. Of all the roller coasters I’ve been on, this is probably my least favorite. I know the end result will be the best of all-time, but the process has been challenging. I’ve been trying to find ways to talk about the last month without coming off as “Woe is me,” because there are people going through times that are much worse than we are. However, I feel that our experiences are valuable, in large part because we have found comfort from similar experiences that others have posted online. It’s important to share our experiences, even if they’re challenging, because you never know who might gain insight from what you’ve been through.
I won’t bury the lede any longer. We’ve now had three brain scans for our baby, and after each, the physician has basically shrugged at us and given his best guess. Another fun twist to our journey has sent me to the operating room and physical therapy for an ACL reconstruction. (Get it? Fun “twist.”) Finally, in what was hopefully the last chapter of this medical saga, my pre-operative EKG revealed that I needed to schedule a visit to a cardiologist “just in case.” Thanks to these events, Abby and I have been wrestling with how much information we want in ways that we never have before. Modern medicine is a gift, but recently it has presented us with more questions than answers. Maybe after reading below, you’ll decide whether you would have proceeded differently than we did, but I hope that we can at least provide context for anyone going through similar decisions.
“What’s in the box?”
Just like in every horror movie, Abby and I were blindly enthusiastic for our baby’s fetal anatomy scan, and we were naive to the impending journey its results would send our mental health upon. Abby laid back with ultrasound gel on her belly, and everyone was smiling until the doctor fell silent and repeatedly scanned one section of our baby’s brain. Those few minutes were the most scared I’ve ever been while watching something. He kept moving the image back and forth, deeper and shallower. We knew he was concerned, but we had no idea why.
Ultimately, we were told that there’s a structure in our baby’s brain that he was having some difficulty seeing. It’s typically an obvious black box in the middle of the head, and it indicates the presence of a corpus callosum, which connects the two hemispheres of the brain. The differential diagnosis for this condition ranges from no symptoms whatsoever to debilitating mental retardation. Everything else in our baby’s scan came back absolutely perfect. In fact, other views of the brain clearly show a healthy corpus callosum. We’ve since had two additional scans to see if a change in positioning or additional gestation might result in a clearer picture, but we’ve been told each time “I think it’s normal, but I can’t see it well enough to say for sure.” At this point, we’re going to have a fetal MRI taken for what multiple physicians think is a completely normal brain.
I continue to think about the circumstances that have led us here. We are getting an incredibly specialized scan because the machine that takes sound waves and turns them into images can’t quite generate a picture of the miniscule structure deep in the brain of a banana-sized, bouncing fetus, and we’re getting them just in case our baby has a condition that could entirely change the complexion of our lives or do absolutely nothing at all. As such, Abby and I are trying to find the balance between optimism and concern. We’ve decided that we’ll seek as much information as possible, because we want to be as prepared as we can be in case something requires greater planning. However, we have also entertained the idea of simply trusting that we have a healthy baby with a healthy mom, and I wouldn’t blame anyone for deciding that they’ve had enough tests. We had a friend tell us that when his mom was pregnant with him, the OB wouldn’t even perform an ultrasound because there were no indications the pregnancy was anything but perfect. I’m coming around to that logic more every day, but now that I know there’s the possibility of something being wrong, I can’t accept that we didn’t do everything possible to give our baby the best chance they’ve got.
Get your house in order
One of the pieces of advice I keep reading for supporters during pregnancy is to take care of yourself. Once my child is here, nobody will want to think about me, especially not me. In December of 2023, I hurt my knee playing ultimate frisbee. I actually texted Abby that day and told her that I think I tore my ACL. Things got better slowly from that point on, but two months later, my knee hadn’t progressed the way I was expecting, and I had an MRI of my own. It revealed that I had completely torn my ACL. I had regained a lot of function in my knee, so for five weeks we tried physical therapy in case we could bring it the rest of the way back. I felt great, and I had actually started to return to sport-like activities, but around the house I felt like my knee was coming out of place periodically. When I returned to my surgeon, he confirmed that despite the strides I had made, my knee was unstable, and surgery was the best option. I’m thankful that my injury happened when it did, because if it happened later, I probably wouldn’t have gotten my knee repaired until well down the road. As it is now, I’m getting myself right just in time. (By the way: “Get your house in order” applies in the literal sense as well.)
If there’s a theme to this post, it’s that despite incredible technology and an abundance of data, there are still frustrating uncertainties we have to navigate. I’ll wrap up my surgical experience with a comical operating room story (which, in my opinion is the best place for comedy). Part of the pre-operating process is an EKG. They want to make sure your heart is strong enough to survive surgery. My surgeon told me that after the surgery, he wanted me to see a cardiologist. “It could be artifact, but I want you to get a second opinion just to make sure.” (Where have we heard that before?) After my surgeon left, the anesthesiologist gave me an injection that he said was for my nerves. “A shot of tequila” he called it. He hurried away, and I’m not sure if it was the tequila or not, but he jumped back into my field of view and shouted “I just saw your EKG! You can run two blocks if I asked you to, right?” At this point I was probably not sober enough to walk on my own, so I basically gestured at my knee and said “I mean, I guess?” This was apparently enough convincing for him, and I was promptly wheeled into the operating room.
Obviously, I’m still here, and I’ve since been told that it’s pretty standard to ask that question before surgery, but it’s still one of the worst experiences I’ve ever had with tequila. Regardless, I’ve since had my cardiology appointment, and I have an incomplete right bundle branch block. While it’s something I might need to keep an eye on in the future, it isn’t something that requires any intervention, nor is it something that will negatively impact my immediate health. So again, this information might be helpful. It might be important for the future, but it could also be much ado about nothing. Is ignorance bliss, or is ignorance just ignorance?
Bonus Unsolicited Commentary
I find the internet to be a deeply conflicting place. I love it for information, but I also can’t stand how much information is accessible. I’m not supposed to be outraged that some sexist man 2,500 miles away says that women don’t deserve rights. However, it would only take me a minute of scrolling through social media to find dozens of examples that amplify these otherwise insignificant voices. However, I also think that some otherwise quiet voices deserve to be amplified. For instance, when we looked for resources after our first anatomy scan, we found many comforting stories about people with similar brain conditions that never show symptoms of disability. Just like with everything else in this post, when scouring the internet, we have to decide how much ignorance we find acceptable and how much information we want to act upon.