The day that we had been waiting for came. It was a difficult week as we waited in uncertainty. We had hopes that the screen was a false positive, but we were still unsure. We knew that driving to Pensacola to meet the High Risk doctor was going to answer some of the questions, so we were anxious to say the least.
Haylee and I didn’t talk about much else that morning. The kids spent the night with Dave & Tina’s (Haylee’s parents), so we could just get up and drive. We were driving, listening to music (usually worship or Yo-Yo Ma), speaking about all the options that it could be. Perhaps it was just the wrong Trisomy? Maybe it was Trisomy 21? At least then the baby could have a longer life. We tried to stop deliberating, and just prayed a lot of the drive. There is something sweet about praying with your spouse when you are in desperate need of the counsel and comfort of God.
When getting to the office, they told us first that we would need to see a “Genetic Counselor” before the doctor. What does that mean? Does that mean they already know the results and they want to counsel us through it? Well... it turns out... yes it does.
The counselor was super nice. She sat us in a room with a table and some brochures. It wasn’t a particularly attractive room. But she came in, sat across from us and pulled out our blood screen results. I couldn’t understand all the jargon. Haylee is better at that sort of thing. She translates to me often when my processing lags. But apparently the same screen can reveal different things for different people. The counselor circled one number on the page... 1/10. Haylee started to tear up again, and I realized that wasn’t a good number. She said that screens are sent back as high risk when it is higher than 1/100. She said lots of her patients with trisomy often have numbers in between those in their screen (like 1/50 for example). So based on our blood results alone... the expectation was extremely high that he does indeed have Trisomy 18.
She left and we just sat there waiting for the in depth ultrasound. Wide eyed, the hope of a false positive all but washed away. So we tried to lean on the strength that God provides. “O God you are our God, and earnestly we seek thee, our souls thirst for thee, our flesh aches for thee as in a dry and weary land where there is no water.” Ps 63:1. Haylee and I encouraged one another that regardless of what happens next, we must earnestly seek the Lord. What else can we do?
Our in-depth ultrasound was long... and quiet. The sonographer made it clear that she was not allowed to tell us anything that she sees. But almost immediately Haylee and I watched the little screen, looked at each other, and teared up. Even a novice like myself could see some glaring differences from this ultrasound and that of our previous two kids. After what seemed like forever, she stepped out of the room while saying that the doctor would be right in.
About 5 minutes later, the doctor came in with a few nurses. He began to discuss our ultrasound findings. “Ultimately, what we found on the ultrasound was consistent with the blood screen… the baby boy has Trisomy 18.” We somehow already knew that was the case. He was very kind and soft spoken, and patient as Haylee and I bombarded him with questions. He spoke of what people typically do in these situations, and what the process may look like. It was so difficult, but for some reason the Lord gave Haylee a strength and power I don’t see very often. She was peaceful and receptive, and I was in awe of how she was handling the whole thing. I knew it was only the peace that God provides.
We were there for a while for more tests and discussions. But eventually we got in our car, and started to drive home. We stopped at Pensacola Beach and both just cried and cried. What hurt us the most was that our boy John Levi most likely wouldn’t even have a chance. The odds are stacked against him, and we as parents wanted badly for it to not be true.
But once again, as God does… he arrives in the most intimate and peaceful of ways. He speaks to our hearts truths of His word. Thank the Lord for His Word!