Day One: The Call that Changed Everything

Our Takeaway: Our worst nightmare came true, and we are still standing.

It was March 16th. Blake and I were beyond excited to publicly share some of the greatest news we had ever received. We were one day from being 13 weeks pregnant. We already had one of our best friends shoot some adorable announcement photos for us, and we each knew exactly which photo we were going to post.

I think it’s worth mentioning that I had been somewhat guarded over our news to this point because I was waiting to receive our 11.5 week test results back. I didn’t want to post anything until we received those results. In hindsight, the few friends and family members of ours who knew about our pregnancy prior to week 13 feel that I was indeed a bit guarded and wasn’t allowing myself the complete joy that most first time moms-to-be celebrate. Many of them later recognized that this could have been some kind of intuition about what was to come.

I was sitting at my office desk when I received a phone call from the office of my OBGYN. I was expecting a call from them as we were waiting to receive our Harmony test results that day, and we had our final appointment that afternoon before we were going to make our big announcement. When I picked up the phone, it was my doctor. That was a bit alarming because it’s usually her assistant who calls me with any information like this.

I might not have known it in that moment, but that phone call was just the beginning of my life being forever changed.

She told me our Harmony test results came back showing that our baby was high risk for having Trisomy 18. I had never even heard of Trisomy 18. The extent that I knew was that it wasn’t Downs Syndrome — it was some other abnormality that was being tested with the Harmony test. She said that it was very concerning and that she did not expect to see these results in someone my age. She also said that this type of chromosomal abnormality is associated with multiple severe defects and is known to be incompatible with life.

Towards the end of the conversation, she mentioned that the Harmony test is not infallible but that she wanted me to go to Northside Hospital immediately to see a specialist for a detailed ultrasound in order to find out some additional information. She had already called and scheduled the appointment for me.

I hung up the phone with my doctor and immediately called Blake. I told him that our worst nightmare was coming true. After telling him everything I had just learned from my doctor, he told me to keep calm and that we shouldn’t trust the results until we had more conclusive evidence. He said he would meet me at the hospital.

Blake:

For the next 2 hours, there was nothing I could do.

I walked into the meeting I was now late for. He asked how I was and I told him it had been a hell of a morning. I was still processing the phone call, knowing my emotions were out of wack and still in disbelief, I told him what I’d heard. He said, let me give you a piece of advice as you both walk through this together, “everyone grieves differently. Give each other the space to grieve how you need to.”

We met for about an hour, then ended the meeting and I headed to the hospital.

At the time of the initial phone call from my doctor, she had not revealed the Harmony test results showed there was a 99 to 1 chance that our baby had Trisomy 18.

I made another phone call to my mom. I told her the news, and like my husband and I, she had never heard of Trisomy 18. My mom reminded me that God is in control and has a plan that is much greater than my own.

It was so tough in those first few moments to imagine that this was something that would actually be in God’s plan for my life. I just couldn’t understand why this was happening to us.

I have now come to realize that I may never understand the why. Blake has encouraged me to focus on “what” rather than “why,” and as a result, we have switched our thinking from trying to understand why God would do this, to trying to understand what He is going to do through this and what our role is in this journey. Another focus of ours has been on what He is trying to teach us.

Back to those first few hours…

As soon as I got off the phone with my mom, I burst into tears in my office. I closed the door and tried to contain myself.

I began to look up everything I could on Trisomy 18. I learned that only about 6% of babies with Trisomy 18 make it to live birth. I learned those babies that do make it to live birth typically die within a few hours or days. Trisomy 18 babies make up about 1 in every 6,000 deliveries, and there are only about 20,000 cases in the US per year. This was an extremely rare abnormality, and yet we were likely going to be one of those few cases. I pleaded with God for a moment in my office. I begged him to make this all go away. Then I pulled myself together enough to head out of my office and over to Northside.

As you can imagine, I started crying while I was signing paperwork at the hospital. The sweet lady behind the desk told me to stay positive and that God had everything under control.

In my heart of hearts, I knew her words were true, but that didn’t change the fact I sitting right in the midst of my worst nightmare and was beginning to feel some of the deepest hurt that I had ever felt in my 30 years of life. She offered me a tissue, and I pulled myself together.

Blake:

On the drive the hospital I sat in silence thinking of what to say and how to react.

As a man, my first thoughts were, “I can’t control what’s happening to my baby, so I need to make sure my wife is taken care of. Marriage is number one. Comfort your wife and be strong.”

When Blake arrived, we didn’t really know what to say at first. We didn’t even hug. You would think in that moment I would’ve been sobbing on his shoulder, but we weren’t ready to be that vulnerable in front of each other yet. We were both doing everything in our power to fight back the tears and emotions in an attempt to remain strong for the other one.

When our appointment time came, they called us back to meet with a genetic counselor. This part was pretty overwhelming. We had no idea why we were meeting with a counselor. We didn’t even know for sure if our baby had Trisomy 18. The counselor explained the severity of the potential diagnosis, what this diagnosis would mean for our emotions around not only this pregnancy but future pregnancies, our diagnostic testing options for the coming few weeks and our options going forward with respect to the baby’s and our own futures, among several other topics.

He briefly discussed that termination of the pregnancy was an option. In the back of my mind, I had a feeling that would come up. I asked him how many couples chose that option. He told us that it varies from location to location but that at this location, in a major city such as Atlanta, the majority of couples choose the termination option when they receive this diagnosis.

After he finished making all of his points, he asked if we had any questions. Blake and I kind of looked at each other and shrugged and said, “no, we would like to confirm that this is real before we can come up with any other questions.” We were still hoping that the results could be wrong, but looking back, it seemed everyone except us knew they were most likely accurate. The counselor said “ok, well I wish you two the best,” and Blake and I headed into the room where we would see a detailed view of our baby on the sonogram.

After a few minutes of waiting, the sonographer came in and began taking photos of our baby using the sonogram image. The baby looked completely normal to us, and as I’m sure many of you know, the sonographer was not allowed to say much about what she was seeing other than what was fairly obvious. She pointed out the normal, beating heart, the head, the limbs, etc. She was measuring a few specific sections of the image of our baby and taking snap shots but was not providing comments on what she was taking pictures of. She got the images she needed and left.

In those few moments alone, I remember Blake and I still hoping for the best. This was only the second time we had seen our baby on a sonogram, and the heartbeat looked strong. I remember begging God silently to make everything ok.

A few minutes later the doctor and her assistant came in.

Almost immediately, she began telling us everything she was seeing on the sonogram (we were 12 weeks and 6 days at this point). First she looked at the baby’s head and said it was enlarged and looked abnormal. Then she noted that there was a significant amount of fluid behind the baby’s neck and surrounding most of the baby’s body. There was swelling, only two vessels in the umbilical chord instead of three and there did not appear to be a nose bone. She told us that this was all very abnormal, very concerning and was consistent with the characteristics of a Trisomy 18 baby. Blake and I briefly brought up the diagnostic testing options that the counselor was explaining to us earlier, and for a few minutes we pondered their worth based on what we had just been told as it appeared obvious to the doctors that it was Trisomy 18. The doctor listened to us discuss the options and added, “we can terminate this pregnancy just based on these sonogram results. You wouldn’t need to have a diagnostic procedure performed.”

That caught Blake completely off guard. I remember his face when he heard those words. Termination was not an option in his mind. But in all honesty, I wasn’t shocked by the comment. It was somewhat blunt and without much empathy but my mind had already gone there. With so many issues and defects, I wondered if allowing this baby to continue to grow was really best. Especially knowing that there would be significant severe problems and likely death at the end of a very short journey. I also wondered how much our baby would suffer if we continued the pregnancy.

We are writing this blog in hopes of being completely transparent with our thinking and decision-making throughout this pregnancy. We want to share the full story behind how we came to making the decisions that we did.

That being said, I would consider myself a Christian (as would Blake), and oftentimes, Christians believe that Christians should never terminate a pregnancy. This was our belief as well. However, when we were faced with two of the hardest and worst decisions we never imagined that we would be forced to make, our thinking began to shift a little. Our eyes were opened to a situation we had never considered.

I also think it’s important to mention that if you are a follower of Jesus, and you are truly seeking His will for your life, I believe that He will lead you to the decisions that He wants you make. You just have to make sure you’re paying attention.

The doctor asked if we needed anything further, and we told her that we needed to go home and discuss our options before we scheduled any additional appointments. I left the hospital crying even though I tried really hard to hold it together. I called my mom as we were leaving and told her everything. I asked her to tell all of our family who knew about the pregnancy, and Blake and I would handle telling all of our friends. Our close friends had a gender reveal party planned for us that was just over a week away. That party was a harsh reminder of how different our reality was than our hopes and dreams.

When I got home, I wrote a text message that I sent to each of our friends who knew we were pregnant. And then I laid in my bed sobbing. I knew God was enough for me, but that didn’t lessen my hurt.