The Diagnosis, Part 1

July 2019

My nightmare and reality collided. I really did have a nightmare before learning Eloise’s diagnosis. It spooked me. I’ve wondered if deep down I knew something was off with my pregnancy. Obviously, hindsight is 20/20, but I think I knew. I couldn’t believe it when the pregnancy test showed a very faint second line. I immediately took another test. It was also positive. I continued to take a test every day until my first ultrasound. I have PCOS, so getting pregnant was not the easiest, and I was in absolute shock. I had been doing all the right things. I took a prenatal vitamin. In an effort to get my hormones under control, I did not eat foods with added sugar, gluten, or dairy. I peed on the ovulation strips. I talked with other women who have PCOS. So when I finally had a positive pregnancy test, I thought it was too good to be true. 

I bled throughout my first trimester. I went to the OB each time this happened, had an ultrasound, and was reassured everything looked okay. I was consistently told things like, “It’s your first baby! You’re just nervous.” I could never shake the feeling that something was wrong. I acted with extra caution, never wanting to get ahead of myself out of fear that I would miscarry. I tried not to get too attached to being pregnant, which was hard to do as I very much felt pregnant. At the same time, I caught myself attempting to bargain with God. Something that sounded like, “Okay, if I have PCOS and I was able to get pregnant, then the baby has to be healthy, right? Right?!” The only actionable step forward that I took during the first trimester was getting a head start on child care. I had heard from friends that this was something to begin right away. Being the practical person that I am, I had a nanny lined up before most people knew I was pregnant. 

I started to feel a little more relaxed once I entered my second trimester. I made it past an imaginary finish line I had set for myself when I thought, “Phew, I must be in the clear now.” I think I was 14 or 15 weeks when we finally announced that I was pregnant. I remember wanting to just wait another week to announce. I wasn’t active on social media, so there was never anything big — just texts, phone calls, and emails to our family and friends. 

Zach and I were apart for about a month of my second trimester. Zach traveled to another country for work while I finished out the school year, and then I visited a friend in Arizona. We navigated a nine-hour time difference, talking late at night for me and early in the morning for him. I had opted not to do any prenatal genetic testing, and, honestly, I’m so glad. Had I done the genetic testing, Zach and I would have received abnormal results and then we would have been separated for a month. We were both back home for about three weeks before the anatomy scan. During this time, we painted Eloise’s nursery, ordered furniture, and I started putting together a baby registry. I was also taking a few classes for my Master’s, and I wanted to get a lot of the baby stuff done before the next school year. June was a busy month. 

We didn’t know we were having an Eloise. I was adamant about not finding out the baby’s gender. Giving birth terrified me, and I thought the surprise of the baby’s gender would motivate me to (literally) push through it. My doula would later help me work through my fears surrounding birth, but I was nervous in the beginning! We decided on a boy name and a girl name early on. Throughout my first trimester, I loved hamburgers, the smell of beer, and anything salty. I was convinced it was a boy, whose name would have been Finn. We didn’t plan to share either of the names until the baby was born. 

On July 1, I had the anatomy scan at my OB’s office. The sonographer didn’t say a lot during the ultrasound. The doctor wasn’t ready for me after she finished, so we were sent back to the waiting room. I began to spiral. Why wasn’t the sonographer chatty? Why was the anatomy scan shorter than I expected? Not that I had anything to base the length on with this being my first pregnancy, but I was underwhelmed. Should I be worried? No, I shouldn’t be worried. I sat there in the waiting room and looked at the black and white sono pictures oohing and ahhing at our baby. 

When we were called back to see my OB, I immediately knew something was wrong. She entered the room with a sad look in her eyes, and I remember her starting with the word unfortunately. Our baby’s brain wasn’t developing the way it should. The baby was small for gestational age. I needed to see a maternal fetal specialist (MFM). I asked if the brain needed more time to develop, if the baby would catch up in growth, the answer was no. 

That’s all we knew. We didn’t know the gender. We didn’t have a diagnosis. I asked the OB if she knew what was wrong. She answered yes but intentionally didn’t want to give us too many details. She didn’t want me to do any googling until I saw the maternal fetal specialist. I’m thankful for her decision, but the wait was maddening. This appointment was on a Monday and by Wednesday I had an appointment with the maternal fetal specialist.

We cried a lot. When we got home after the anatomy scan, Zach and I separately called our parents. Our parents cried alongside us. I felt protective over this news. I did not want to tell many people. My parents came to stay with us, and they joined us for the appointment on Wednesday. We knew it could be an emotional appointment for us, so we wanted other family members there for support. 

The day in between appointments was one of the hardest. We knew but we didn’t know, and we had no choice but to live in the tension. Desperate for any information, I called the OB’s office to find out the gender. The sonographer didn’t get a good look, which was a bummer. Something was wrong with our baby, and we didn’t even know if it was a boy or a girl! 

We found out the gender at the MFM appointment. It was not a cute moment like you see in movies or on social media. Maybe ten minutes into the ultrasound, a nurse came into the room to ask how tall Zach and I were. The nurse left and then the sonographer blurted out, “It’s a girl!” Still not having any information about the diagnosis, I’m laying there wondering why the nurse would interrupt the ultrasound to ask about our heights, and then I found out I was going to be a girl mom. While we waited for the doctor after the ultrasound was finished, I remember my parents asking about the name. In that moment, we decided to share her name, and this was when it became real – Eloise was our daughter.

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Rachel Singleton

Rachel Singleton

I’m Rachel, Eloise’s mom. I share my experiences to help other medical mamas and families feel less alone in navigating everyday life. I also hope to educate others about what it’s like to raise a child with complex medical needs. There’s a lot of joy and a lot of grief and a lot of tears. Thank you for being here.