The Stevens Family

At 21 weeks, we elected to have a routine anatomy scan amidst a relatively event-free and easy twin pregnancy. We were excited to be working with midwives we love and trust, and we were still set on having a peaceful home birth.

The ultrasound tech commented on how good each placenta looked. She noted that the amniotic fluid was perfect, and there were no signs of preterm labor. She continued across their little 12 and 13 ounce bodies, taking pictures of their brains, spines, arms, legs, fingers, and toes. Walt was a little squished by his sister, so she left him to go to Lumi. She said, “Look at that beautiful heart!” We saw four chambers and a steady beat pumping blood. Then the tech said, “I’m going to go back to baby boy one more time.”

“That doesn’t look right. What’s going on there? I’m not sure what that is, but I’m glad I came back to it because his heart doesn’t look right.”

Shortly thereafter, she leaves the room. Perry and I sit in silence. I close my eyes and begin to pray. I think Perry might’ve said something to reassure me, but my mind was reeling. In comes a lady in plain clothes (who we later found out was the genetic counselor). She sits down and asks how the pregnancy has been going. I told her it was going well but the tech mentioned a problem with baby boy’s heart.

Her disposition changes and she says, “Yeah, we’re really worried about that. It doesn’t look good.” She proceeds to tell us it looks like hypoplastic left heart syndrome, which means nothing to us at this point. She says Vanderbilt no longer accepts these cases so I’ll be delivering at Duke or somewhere else with a pediatric cardiologist surgeon and that we should do genetic testing to see if there are other issues.

Then the doctor comes in, also down trodden, and repeats much of the same information with lots more sprinkled in. She explains that HLHS means Walt only has two heart chambers instead of four; only the right side of his heart developed. It is a very rare but serious heart defect.

At this point, we still don’t know if there are any options or what this means for Walt long-term. We are trying to understand and process. The doctor tells us best case scenario is that he’s a candidate for three surgeries between the ages of 0-5 and that he will likely need a heart transplant by age 30 or 40. She says there are some young adults living with this condition now because of the surgeries, but without that, he would die shortly after birth. She says some parents choose comfort care instead of surgery, opting to go home on hospice.

She also offers for us to terminate the pregnancy. I smiled and said, “We’re keeping him.” At 21 weeks pregnant, while I’m carrying not one baby but two, a doctor in Tennessee offered for me to end the life of my unborn child as an option for “treatment.” Walt is perfectly safe in utero at this point, because babies’ hearts work differently before they’re born. And yet a medical professional whose job is to provide life-saving care, suggested killing him as an option.

I’m not mad at her specifically, but I am mad that we live in a society where that is acceptable. I’m offended that while I was receiving some of the worst news of my life, someone had the audacity to ask me if I’d like to dispose of the problem, as if he was a product I could simply discard once I found it to be faulty.

But in the moment, I wasn’t angry. I was grieving, but I had peace that can only be explained by Christ in me. I was able to tell the doctor and genetic counselor of how God sustained Walt and Lumi for 25 years already and how we trust His plan for their lives.

We pray and long for the day when even the idea of killing a child in the womb is unimaginable, even among those who are not Christians. At the moment egg and sperm meet, a new life is formed, and that new life is an image-bearer of God, made in His image. Before He laid the foundation of the earth, the Lord knew Walt and Lumi. He knew how they would come into the world, how long they would be frozen in a tube, who would be their parents, and how He would use them to bring Him glory and us good. We thank Him for that and trust that “behind a frowning providence, He hides a smiling face.”