Day of diagnosis

As soon as we left the house the morning of Nov. 12, 2019, I could tell it was bound to be a bad day.

We live in Los Angeles, but even after more than a year living here, we're still not accustomed to the traffic, and I don't know if we ever will be.

Jack and I left the house at 6:50 a.m. to drive to UCLA and meet Blake for a routine 12-week ultrasound — 6:50 a.m. for a 8:30 a.m. appointment, that is. I was sure an hour and 40 minutes would be plenty of time to travel the 8 miles from our apartment to UCLA Medical Center, but as is the case with LA traffic, there's no telling what will happen. That drive at that time of day could take as little as 25 minutes, but on Nov. 12, for whatever reason, an hour and 40 minutes wasn't enough time.

At one point on our drive, Google Maps tried to direct me on a street that had a big "no thru traffic 6 a.m.-9 a.m. sign" on it — the city's way of keeping too much traffic out of some of the wealthier neighborhoods during rush hour. We were already very late and I thought for a moment about just turning up that street anyway, but the thought popped into my head, "If you want to have the Spirit with you, you need to be honest."

Boy, am I glad I had the Spirit with me that day.

We arrived about 10-15 minutes late to the appointment, so I left Blake with Jack and the car to park and I ran up to check in. They joined me a few minutes later and just a few minutes after that, we were taken into the ultrasound room.

A tech came in first and pulled up my information on the machine and rubbed the ultrasound goop on my stomach. She moved the probe around a bit, checked the heartbeat so we could hear it and then sort of turned the screen away from me. At first, I tried to tell myself it was just so she could see it better. After a short look, she said she couldn't get a good enough view so she was going to have the doctor come in and they would do a transvaginal ultrasound instead.

As she left the room, she wouldn't look me in the eye.

When the door shut, I said to Blake, "Something is wrong." I could already feel it.

Blake tried to reassure me, saying he was sure her brevity didn't mean anything, but I later found out he also felt like something was wrong but was trying to help me stay calm.

Aside from severe nausea, I hadn't experienced any complications up to this point of pregnancy. We had just heard the heartbeat, so I knew I hadn't miscarried, so my mind started wandering. Could it be Down syndrome? A heart abnormality? Dwarfism? I had no idea how much they could tell from a 12-week ultrasound, but I was already sure something was out of the ordinary.

I got prepared for the transvaginal ultrasound and a few minutes later the tech returned with the doctor who specializes in ultrasounds. They began the process, and the doctor asked the tech to move the probe to a few certain angles. I still couldn't see the screen, so I was zeroed in on the doctor's face, watching the moment it fell.

"Something is wrong," I said. "I can tell."

"I'm so sorry, but yes, something is very wrong," she said.

I immediately burst into tears. I am the type of person that in the moment of bad news, I feel things very deeply. I was devastated. I demanded — probably somewhat tersely in hindsight — that she tell me immediately what was wrong. I honestly don't remember whether she used the word anencephaly in that moment. If she did, whatever she said went right through me and she excused herself so I could get dressed before she came back in to talk more.

With Jack in his arms, Blake came to put his arms around me. In that moment, all I could think were two things: My body had failed us, and I had failed Jack. I felt like the most irresponsible parent on the planet for having him there with us, making him sit there, not understanding, as I sobbed uncontrollably.

The doctor came back in a few minutes later and explained the situation. Whenever it was that she said the word "anencephaly" for the first time, I had no idea what it was, but Blake was familiar with the condition.

She went on to explain that for whatever reason, very early on in the pregnancy, perhaps before I even knew I was pregnant, a large portion of our baby's brain and skull didn't develop, leaving whatever part of the brain did develop exposed to the amniotic fluid.

Luke at 20 weeks. This ultrasound shows his profile and the
top missing part of his skull and brain.

"Is there anything that can be done?" I asked.

"No," the doctor replied. "This is a condition that will not support life and one we generally encourage families to terminate the pregnancy."

"I won't. I won't terminate the pregnancy," I said.

Blake, my rock and the level-headed logic to my emotional storm, took over the questioning from there: Would my body miscarry the baby naturally? No. Is Whitney's life at risk? No, not any more than with a normal pregnancy. Will the pregnancy continue to full term if we don't terminate? Yes. Will the baby be born alive if we carry to term? Most are stillborn and any who do live won't live longer than a few hours at most.

By this point, I was numb. I had no idea what to think, what to ask, what to do. I had so readily declared I wouldn't abort the pregnancy, but I suddenly found myself unsure.

The doctor asked if we'd still like to meet with my regular doctor to discuss things, but we decided to just go home and start to process things, so the ultrasound doctor said she'd be sure to have my doctor call later that day.

My OBGYN's office is on the fourth floor of one of the many buildings that make up UCLA Medical Center, and I swear it has the slowest elevators on the planet. That day as we waited for the elevator to come take us down to the parking level, I stood staring out the window overlooking Westwood with tears streaming down my face. Jack was looking out the window, too, spinning in circles, babbling about something, being the happy boy he always is. He knew Mommy was sad but, thankfully, didn't understand the gravity of what was going on. Seeing him made me smile briefly as we waited, waited, waited the elevator, several other people around watching us because of how obviously upset I was.

As we finally entered the elevator, an older woman I didn't know grabbed my arm and gave it an affectionate squeeze.

"I'm sorry, dear."

She had no idea what was going on, but her simple words, her compassion, were a little ray of sunshine in a day I knew was only going to continue to be hard.

It turns out the traffic had been the least of my worries.