It was early on a Friday morning in March. We dropped our kids off with my mom so we could both be there for our anatomy scan. I had a lingering fear that I could not quite explain. I had told a few friends that I was nervous about the anatomy scan, declined my mom’s offer to go to the appointment with me instead of my husband. For reasons I didn’t know at the time, I wanted him there with me even though this was our third baby, par for the course, routine, just another ultrasound. A mother’s intuition they call it, I believe that intuition comes from God. He had been preparing me for this for months, maybe years, maybe my whole life.
I look back on that morning, and I see a different woman. I can only imagine how much I won’t recognize her by the end of the year. Our OB’s office is down the hall from a medical spa, I told my husband I was going to schedule massages after the rest of my OB appointments, little did I know I would only be back in that office a few more times (no, I did not schedule any massages, but I really should have). After we had the ultrasound, we were in the waiting room and we talked about our plan to surprise our family with the news that we were having a little boy. We had accidentally found out the gender weeks before, again that nagging fear that something was wrong was eating at me long before this day. We got the results of our genetic screening late on a Friday evening and I knew I could not wait until Monday to hear from the doctor, so I looked and even though we had opted not to have the gender testing done it was right there on the report. As I said, this is my third child, we have had the genetic testing done three times, and not one time have I felt the need to look at those results. My daughters had sat unopened in my lab results for 4 years. I would’ve been 10 weeks at the time, exactly when my son’s diaphragm should’ve been forming as a barrier between his chest and his stomach. I just knew something was not right. I told myself that these were intrusive thoughts, rooted in our previous struggles to conceive. We didn’t think having a baby on accident was possible for us, but it had happened, without any effort or tests or scheduling, and I thought I was just battling with my brain that it couldn’t be this easy, we couldn’t just get pregnant on accident and have a healthy baby. There is, of course, a part of me that wishes I was wrong, wishes I could tell you that it was all in my head, that we conceived a baby naturally, with zero effort, and he is going to be born naturally on or around his due date and we would get to snuggle and struggle through breastfeeding and sleep deprivation, but that was not our path.
We were called back to see the doctor after a short wait and when she came in and I saw the look on her face I think I almost felt a sense of relief. I could see that she was going to tell us something was wrong and I felt like at least I could finally face it, I could finally know for sure what I had been feeling for months. She told us that it looked like some of baby’s stomach was in his chest, I actually can’t remember if she used the words diaphragmatic hernia. She had very little information for us and told us she would not be able to answer very many, if any, of our questions. We would have to wait until we could see the maternal-fetal medicine doctor at Riley’s Children’s Hospital, and they would be able to tell us more. I did not realize how serious this would all be at the time. I thought the baby would just need a surgery after he was born to repair his diaphragm and move his stomach back into his abdomen, again I see a different woman sitting in that room than the one writing this today.
We snuggled our other babies hard that weekend, grateful is an understatement. I saw them in a whole new light, and I know my husband did too. How ignorant had we been to think it was just normal to bring two perfectly healthy babies into this world. It is not, it is an absolute miracle, and I am so incredibly grateful that I see that now. We got the call on Monday to schedule our visit to Riley, they were able to see us that week, so we cleared our schedule for Thursday morning. Our appointment was early and we live in the country. I think I had asked my mom to be there by 615 and it was early March so still very dark at that hour. She called me in an absolute panic because she had missed her turn and it was too dark for her to see where she was and her phone was not doing what it was supposed to. My husband walked into the kitchen while I was on the phone with her and asked if I knew what time it was and if I was ready to go. I felt like everyone around me was panicking, and I was for once the calm one. If you have ever been around me when it is time to leave and things are not going the way I had planned, you know that this is beyond not normal for me. In fact, I would say one of the main reasons I am in therapy for anxiety is because kids make it impossible to get out of the house on time and in an orderly fashion and it makes me insane. But on this morning, amidst the chaos, I had peace that I know was not my own.
We made it to our appointment on time. The echocardiogram was first, and the cardiologist reported that outside of his heart being shifted to the right, it looked anatomically normal. We took a deep breath, some good news. The extensive ultrasound was next. A very different experience than a normal ultrasound, the tech was talking us through everything she saw and explaining things to us as she went. If you’ve ever had an ultrasound, they normally won’t tell you much of anything, deferring to the doctor for any interpretation of what they are seeing, I am so grateful that is not how this went. The doctor came in shortly after the ultrasound was finished and I look back on that moment and know there is a before and there is an after, and our world will never be the same from that moment on. They do a measurement called the lung-to-head ratio, where they measure the lungs and compare it to the measurement of the baby’s head and then they use that ratio to compare our baby to the norm. A diaphragmatic hernia is considered severe when the lung-to-head ratio is less than 30% of the norm, our baby’s was about 23%. She gave our baby boy about a 50% chance of survival. I remember thinking that I should be crying, having some type of reaction, but I just stared at her. I wanted to say something, do something, feel something-but I couldn’t, my mind was blank. This is not what I was expecting. She talked briefly about some options for intervention that would require us to go to another hospital, I asked her to send us some information on that option and then we were moved to a different room to talk with a genetic counselor. And after that we were done, sent off into the world with this information and absolutely no idea what to do with it. If you have ever gotten particularly bad news, you probably know the feeling of walking around in the normal world with it. Like everything and everyone around you is moving at a normal pace but things are moving slower for you, and you just can’t seem to find your footing but no one around you knows. That’s how I would describe the rest of that day, the world was moving a little bit faster than my brain could handle, so we stayed home in our bubble where we could slow down and have time to process.
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