Zoee’s Story: Racing for Trisomy 18 and Changing the Narrative | Talking Trisomy

She Found Out She Was Pregnant the Same Day She Found Out About Trisomy 18

Sarah Wisecarver of Ohio has what doctors call a cryptic pregnancy. She does not get early signs. She did not know she was pregnant with her first daughter Journey until five months along. The same thing happened with Zoe.

On July 3rd, Sarah went in not feeling right and came out pregnant. Her first prenatal visit was July 22nd. Two days after that, she saw results on her chart before the doctor even called. High risk for Trisomy 18 (Edwards syndrome). The first time she had ever heard that word.

She went to Google, like most of us do. What she found was extensive and terrifying.

She called Darren immediately. He referred them to maternal fetal medicine in Columbus. And at that appointment, before they had even done the in-depth ultrasound, came the push to terminate.

I Came Here for an Ultrasound. That Is the End of This Discussion.

The genetic counselor at the Columbus appointment had a suggestion. Sarah looked out the window, then looked back at her.

They went down the hallway for the ultrasound. The physical markers that typically indicate a Trisomy 18 diagnosis were not clearly visible. Zoee was measuring small and had what might be described as a strawberry-shaped head. But Sarah was already five months along and had no prior measurements to compare to, so small could simply mean earlier than estimated.

As a family, the Wisecarvers made a decision. They were not going to fight Zoee's battle for her. They were going to put it in God's hands and let Zoee decide what kind of fight she wanted to put up.

The doctors said they should not expect to feel much movement from a Trisomy 18 baby. Sarah felt Zoee every single day.

Zoee Arrived at 31 Weeks. She Already Knew What She Wanted.

Zoee was born at 31 weeks and two days. From the beginning she was communicating exactly who she was. She did not want her feet swaddled. The nurses figured this out quickly: if you wanted a calm night, you left Zoee's feet free to kick and wiggle. It went in her chart. Every incoming nurse was told. Do not swaddle her feet.

She was alert. When her family walked into the NICU room, she knew. She would look at them with her eyes in a way that felt like she had a lot to say and was working on another way to say it. Darren could tell the difference between a content kick and an uncomfortable one. When the loud modified race cars would come onto the track at the events Sarah drove during the pregnancy, Zoee moved one way. When the crotch rocket engine sport mods came out, she went still. She had opinions.

Zoee stayed in the NICU for 53 days. She tolerated her feeds. She grew. She doubled her birth weight. The goal was to get her strong enough for the cardiac surgery she needed.

The Surgery That Did Not Come in Time

Zoee had a large VSD at the bottom of her heart, a hole between the lower chambers. She also had a pulmonary valve that was not supplying adequate oxygenated blood to her lungs. The plan was to patch the VSD and place a stent or balloon in the pulmonary valve to keep it open as she grew. The surgery was approved. Then the team grouped. Within a couple of days, everything changed.

Darren believes the Trisomy 18 diagnosis changed how hard the team was willing to fight. He watched other NICU babies receive interventions. He read about children a pound and a half receiving cardiac surgery. He does not believe every doctor on Zoee's team saw her the same way they would have seen a child without a trisomy diagnosis.

He is careful to say that not every doctor was this way. There were remarkable people on Zoee's team. But when a team gathers to make a collective decision and one voice is still anchored to the statistics of the 1970s, it is hard to move the whole room forward.

Sarah put it plainly: medicine is far more advanced than it was when those original statistics were written. Those numbers need to be challenged. Each child deserves to be treated as an individual, not as a diagnosis.

What It Looks Like to Be a Father in That NICU

Darren Wisecarver tried not to say this out loud for a long time. As a father, he felt he had to stay level. He had to keep his head right so he could be there for Sarah, for Journey, for the family. And that meant not letting himself feel everything he was actually feeling.

He went to see Zoee as much as he could. He washed his hands to his elbows every time before reaching in to hold her finger. He learned quickly to walk into the NICU and wrap everything else around him in a kind of mental wall so he could focus only on his daughter and his family. Because if you do not do that, he says, it will drive you somewhere you do not want to go.

When the hospital called to say they needed to come immediately, Darren picked up his mother in law and his own mother and drove from their hometown to Columbus. His father in law called him later and asked if that was him blowing past on the highway. It was. They got there in time.

Journey

Journey Wisecarver was nine years old when she joined this episode. Her favorite memory of her sister Zoee is simple and specific: Zoee did not want her feet swaddled. She wanted them free to kick. And Journey watched the nurses learn that, and write it down, and tell the next shift.

Darren's favorite memory is a photograph. Sarah sent it to him while he was not at the hospital that day. In the picture, Journey is standing beside the isolette with both hands on her little sister. That was Journey's seat. She had to be next to Zoe. Every time Darren looks at that photograph he feels the same thing he felt the first time.

At the end of the episode, Journey was asked what she would want to tell other kids about Trisomy 18. She thought about it for a moment. Then she said: no matter what happens in life with it, you will always be right here in your heart.

Ten Thousand Pages

After Zoee passed, Sarah requested all of her medical records. They arrived in three boxes, roughly a foot by a foot by eight inches wide. Over ten thousand pages in 53 days.

She read them in three days.

She was not looking for something to be angry about. She was not looking to assign blame. She wanted to see it all, down to the dot and the comma and the notes written between the formal updates. She read it with a clear head rather than raw emotion, she says, because you cannot change anything now. Now it is about learning. And maybe about helping someone else.

If you are a researcher, a geneticist, or a physician working on trisomy outcomes, the Wisecarvers are willing to share Zoee's complete medical records. Reach out through SOFT at trisomy.org and we will make the connection.

Racing for Zoe. Car Number E18.

Sarah Wisecarver drives dirt track race cars in Ohio and West Virginia. She started racing years ago to raise awareness for her father, who was battling cancer. The car number was 57, his birth year. She was pregnant with Zoee during that first racing season and did not know it yet.

After losing Zoee, the idea of going back to the track felt different. Then Darren was at an auction one day, buying a truck, and a Ford Focus came across four lanes away. It looked practically new. He bought it the same afternoon he bought the truck. He called his crew. He called the sign shop — the same person who had wrapped Zoee's casket and refused to charge them for it. Within days the car was stripped, built, and wrapped.

The hood reads: Breaking Barriers. Trisomy 18. Zoee's picture is in the middle. The car number is E18.

People in the stands ask about the car. They ask about Trisomy 18. They walk away knowing a word they did not know before. That is the point. Sarah wants to see Trisomy 18 represented in racing the way autism is represented by puzzle pieces on other cars. Someone has to be the one to do it. So they are doing it.

The next car will be a double seater, designed to offer safe laps to families at events with the proceeds going toward Trisomy 18 families in need. If you are in Ohio or West Virginia and want to come out to a race, reach out. They will make sure you get there.

What Grief Taught Them

Sarah became a school bus driver for West Noble School District after Zoee passed. She was not sure what she was looking for. But sixty kids on a bus, she says, have a way of reminding you that life is still happening. The school district checked on her. The kids help her every single day, even on the loud ones.

Darren left the career he was in. He runs a used car lot now. He will tell you Zoee had something to do with that.

Grief, he says, makes you reevaluate everything down to what matters and what does not. Things you thought mattered a lot look different afterward. And if it does not sit right here, he says, pointing to his chest, it is not where you are meant to be.