Our Trisomy 18 Journey: The Anatomy Ultrasound

He was tiny, but he was perfect in every way. A mother remembering her infant son who died shortly after childbirth due to Trisomy 18May 8th was perhaps the hardest day of my life.

After the phone call the night before, I asked my mom to come sit with me at the anatomy ultrasound. She was running behind because of traffic, and my heart was beating out of control. She made it, though. Thank goodness, she made it.

They called my name and we headed back. I told the tech about my phone call with Dr. Weed, and as I presumed, she had not been updated.

As the ultrasound proceeded, I was told there was a heart beat. He was alive. He was ALIVE! That, to me, was everything. I let my heart and mind ease a bit as she scanned his body on the screen. His little legs and feet were precious. Both of his hands had one finger pointing upwards, as if to say, “I’m number one!” Looking back, I wonder now if he was pointing up to heaven, letting me know he would be okay no matter what.

“Congratulations! You are having a boy,” the tech said. At that moment, I felt calm. Tears of joy flowed down my face because I knew that she wouldn’t have used those words if there was bad news. The blood work, as expected, was wrong.

The ultrasound lasted for an hour and a half, which seemed like a lifetime. The tech was pleasant and had made me feel like everything was okay. It was going to be okay. She then told me to head upstairs to talk to the OBGYN to go over the results. Each time I’ve had an ultrasound, that has been standard procedure, so I was still feeling okay about the whole thing.

My mom and I went upstairs and waited. And waited. And waited. It was the end of the day and the waiting room was clearing out. Then and only then, they called my name. My mom and I headed back to an empty room and sat down in two chairs that were against the wall. The doctor took quite some time to come in, but I could hear him tending to the woman in the room next door and knew he was doing his best.

He came in and grabbed another chair, pulling it close to my mother and I.

Then he said the words that changed my life forever. The days to come were SO incredibly difficult, but for some reason, this moment was and will remain the moment that I felt the most pain.

“There is no easy way to tell you this…”

My heart sank.

“But the ultrasound results show a slough of abnormalities. I’ve never seen anything like this before.”

We talked more. He told me he had never experienced this before and that the ultrasound specialist felt it was consistent with “Edwards Syndrome.” He said he had never heard of it, but I knew. I knew from my conversation with Dr. Weed that “Edwards Syndrome” was the same as Trisomy 18.

At one point, I think my heart stopped. I legitimately felt like I could not breathe. It was a moment in time that I will never be able to let go of. My body, my heart, would not allow me to process what my mind was telling me. I had to stand up. I had to lean against the door and tried to catch my breathe before I could continue the conversation. I was feeling my heart break–and my life changed forever.

I asked him what they saw and he advised me that he felt it was best I didn’t hear it. He felt it would be “too overwhelming” in an already devastating situation.

I didn’t understand. I spoke with Dr. Weed about what Trisomy 18 can do to a baby’s anatomy. I had researched it online the night before. As I sat in that ultrasound room and heard the tech “congratulate” me on my baby boy, I felt so much relief. I watched her scan his body, and to the naked eye, nothing was wrong. He was perfect.

What was happening?

Dr. Coats was so kind and so sweet with his delivery of the information and for that, I am grateful. I could feel his compassion. I felt so bad that he had to be the one to tell me because I could tell that it hurt him, maybe almost as much as it hurt me. He reminded me to be mindful of my husband, and that men often take these things very hard. He told me to remember my family and to rely on each other during this difficult time.

I rushed out of the office and into the bathroom. I needed to regain my composure before I walked back to the car. The office had cleared out and I realized that they had done that on purpose. The timing was all on purpose. It felt like I needed to be quarantined as to not upset the other patients. Although I understand why, it didn’t help ease the sting of what was happening. In retrospect, I had always avoided male OBGYN’s, but wish now that I had gone to him all along. He was the only doctor there at Kaiser Permanente that seemed to listen to me and to care.

I called Dr. Weed and her compassion was obvious. There I was, chatting with this doctor on her personal cell phone. She did her best to get me in the next day or the day after, but to no avail. Instead, she helped me get in to another office to see her coworker who wanted to perform an amniocentesis. They wanted to do further investigation, although the ultrasound and blood work were already pretty telling.

It’s amazing, though, that when in that moment, you can’t wait. You cannot fathom the idea of going back home and just sitting there, not knowing for certain. Doctors tell you to stay calm and that everything will be “okay.” But is is, though?

To the mom’s who have already miscarried their babies and have to wait to deliver, is it  really “okay?”

To the mom’s who have been given a diagnosis of fetal abnormality, is it really “okay” to ask them to wait for the weekend to pass or for an appointment to open up in the office the following week? While the doctors lives may go on, the lives of these heartbroken mother have stopped entirely.

Waiting is the hardest part.

What are your thoughts?

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