How I Coped with a Difficult Diagnosis After Prenatal Testing

I was in the first trimester of pregnancy with my second child, sitting at my New York City office desk one afternoon when I got an important phone call. Several days before, my husband and I chose to get some early genetic testing done. When I picked up the phone, it was the doctor overseeing the testing; her tone was soft and gentle as she said hello and asked how I was doing. The base of my skull tingled and my stomach flipped. Call it intuition or pessimism, but I knew deep-down that the news to come wasn't going to be good.

I put the doctor on hold as I closed my office door and conferenced my husband into the phone call. The conversation was short. The testing we had elected was to discover chromosome details and flag any potential abnormalities. The preliminary results were positive forMosaic Trisomy 13, a condition I understood to mean an abnormality concerning chromosome 13.

We were told the condition is rare. The doctor drew out two paths: If the condition was "in," or with, the baby, we would have to decide whether or not to proceed with the pregnancy. It appeared that babies with this condition would likely experience severe complications,including the potential for a very low survival rate.

If, however, the condition was isolated to the placenta then I was told that I could proceed with the pregnancy with regular monitoring to check on the baby's development.The doctors were going to run the tests and find out. When I hung up the phone, I literally didn't know what to do with myself.

Perhaps because I was a journalist, or maybe because I was a naturally curious and info-hungry person, I immediately began researching this disorder. And I was crushed to find that, probably due to the rarity of the condition, there wasn't a lot of deeply researched information to be found on how a baby would progress—in or out of the womb—if grown with Mosaic Trisomy 13 confined to its placenta. And soI assembled a list of questionsto prepare for my next conversation with the doctors.

I honestly can’t remember how long we had to wait. It took days, maybe a week or so. What I do remember is feeling the extremes: I would either try to block out the memory of the conversation and thoughts of the condition, or I would let the fears consume me. Sometimes I would find myself in a conversation with coworkers, talking about a story that I was working on or a meeting for which I had to prepare, and I would forget, for a second, that I didn't know how this pregnancy was going to continue.

Through sheer will and determination, I learned how to effectively compartmentalize. When worries or scary thoughts started playing like a movie in front of my eyes, I would shove them behind a mental stone wall. I would distract myself like a toddler, literally putting work or an activity in front of me at most times.

At night, when I was in the shower, or lying in bed, I would allow myself to think about it. Every outcome played through my mind, judgment-free. My husband and I talked about it whenever one of us needed to, but ultimately we decided to wait; we would wait until we had more information before having conversations about our options.

I found that being around my 2-year-old daughter made it easier to stay present. She was so engaging, chatty, and joyful. I would surrender to her energy and engage with her on every level. I’d lose myself in those happy moments with my girl.

当我和我丈夫收到后续调用,we held our breath. We were told it was “good news.” The condition was isolated to the placenta. I let go of my breath in a huge puff of relief. I think I smiled, and I'm pretty sure I had tears in my eyes. I was grateful beyond words.

这个消息是presented to us like it was great, and now we could move forward. But in my mind, this conversation was far from over. I had so many questions: What did this all mean? Ifthe placenta, which literally feeds the baby, is compromised, what does this mean for the baby?

I was toldme and the baby would be watched and monitored closely, and the baby would be measured for growth progression once a month. If we were going to move forward with the pregnancy, which my husband and I were, there wasn't much more to be done at this point. And so, life went on.

I'd always thought of my pregnancies as lessons in letting go of control. But in that heightened state of "what if," control was literally a laughable idea. I had no control over how my placenta was going to respond in the coming months. I focused on what I could control.

I started making differentchoices about my diet—more grains, less cheese—I began enforcing an earlier bedtime for myself, and I tried to keep perspective in every situation. These little acts helped me feel like I had some control, and distracted me from the task of “figuring out” how this pregnancy was going to develop. I could take better care of myself, and therefore my baby. The rest, I had to surrender.

As my journey was just beginning, I'd have to remind myself of these lessons throughout the coming months. When doctors decided toinduce my laborearly and had to perform an unexpectedcesarean sectionto bring my baby boy into the world, I had to keep reminding myself that I couldn't control everything. These were hard lessons, to say the least, but they helped sharpen my focus on the things that were in my grasp, like caring for the new little life in my arms.