“This is the world,” Aaron said gently, breaking the room’s heavy silence. As he spoke, he knew that Zachary would never actually get to see the city or anything that lies beyond it. A handful of breaths after coming into the world, the infant, splayed on his mother’s chest, passed away. His death wasn’t a surprise. Zachary had been diagnosed in the womb with a fatal genetic condition. But knowing their little boy wouldn’t live to assume his place in the world didn’t make the Chutes’ loss any less heartbreaking.
“I delivered him, and I put him on my chest. He moved a little bit but never cried, never opened his eyes,” Alexis Marie recounts. “My husband and I both held Zachary skin to skin, which was really important to us. We only had just a few minutes with him… We held him and rocked him, and then he died.”
On October 14, the Chutes marked the four-year anniversary of Zachary’s death.
“The fact that I had Zachary, and the fact that I only had him for such a short time—he drastically changed our entire family. He changed my life,” Alexis Marie explains. “My ideal family was to have all the kids close together.” If everything had gone according to plan, the Chutes’ first child, a daughter named Hannah, would have had a brother just one year younger than she. “With my daughter, everything turned out well and she was such a great baby. So I thought, ‘I can do this again.’”
Little did Alexis Marie know her second pregnancy would be the test of her life. Hannah was just four months old when Alexis Marie got pregnant with Zachary. “I have always been an ‘excited’ pregnant person,” she says. “So, right when I found out I was pregnant with Hannah—and right when I found out I was pregnant with Zachary—at, like, five weeks, I was telling people. I remember saying to my girlfriends, ‘I’m really happy telling everybody right away because then if something happens, I’m going to have support.”
It wasn’t until she was 25 weeks along with Zachary that Alexis Marie would be haunted by those words. “We had an ultrasound that was more for the pictures—more for fun.” The mood in the room turned, though, when the ultrasound technician began to scrunch up her face at the image of a white mass on the screen. She left the room, then returned with the doctor, who explained baby Zachary had a large tumour around his heart and other worrisome lesions growing throughout his body.
“They said a lot of things that I didn’t understand at that point. It was almost like I couldn’t hear,” Alexis Marie says. “I felt like, we live in a modern society. We have great healthcare. I never thought, at that moment, that my child wouldn’t live. We watch TV shows and see all these amazing doctors, who always save the day at the last second. But real life isn’t like that.”
Zachary was diagnosed with Tubular Sclerosis, a rare genetic disease that causes non-malignant tumours to grow on vital organs, including the heart, brain and kidneys. Incurable, the disease can often be managed if detected after birth. But the form Zachary was suffering from aggressively threatened his life. “The tumour was squeezing his heart. You couldn’t even totally see the two chambers that pump—the ultrasounds just looked like he had a white mass in his chest,” Alexis Marie says.
The Chutes were told that Zachary would likely be stillborn if he made it to term. Because Alexis Marie was more than 20 weeks along in her pregnancy—and her baby’s body was filling steadily with fluid from the aggressive lesions—she was given the option to terminate. “We really struggled with that,” she says. If Zachary had lived, he might not have had the easiest life, because of the condition he had. But at the end of the day, I didn’t want to choose to end his life. Everybody has their own moral and ethical feelings about that kind of thing. We are a religious family—I felt like I couldn’t do that, so we just held on and hoped things would improve. We just kept hoping for a miracle.”
In the month and a half after Zachary’s diagnosis, the Chutes’ life transformed into a tailspin of 12-hour days packed with visits to specialists whom the couple hoped would present them with a cure. “But every day they just reaffirmed that things were getting worse. If Zachary did make it to delivery, they said he would die in the birth canal. No prognosis was positive. His body kept filling up with more fluid, and his heart rate kept going down.”
At 30 weeks, Alexis Marie’s own health grew threatened by Zachary’s condition. She and Aaron agreed to an induction. At home, the night before it was scheduled to take place, though, Alexis Marie went into spontaneous labour. The following day, she would both welcome Zachary into the world, and say goodbye to him.
Read more: Pregnancy loss support groups and events>
In the four years since, Alexis Marie has seen her life transformed as a result of her effort to metabolize the grief that flowed from Zachary’s loss. She writes a blog, Wanted, Chosen Planned, that keeps her engaged with a strong online community she credits with helping her recover from the “shell of a person” she was after losing Zachary. She also speaks regularly about loss at conferences and to individuals who reach out to her for help. While she and Aaron have since had a second son, Eden, now two years old, they also continue to struggle with the ripple effects of grief.
“When everything fell apart in our family, it was really hard letting go of the vision of what I thought my life was going to be like,” says Alexis Marie. She refers to herself as a mother of three. “Time doesn’t heal, but it helps. You’ll never forget your child, but it does get easier. Just knowing that you’re not walking the road alone—it makes a huge difference.”