A Tale of Two Terminally Ill Babies In the Womb—and the Legacy of Choice


Yesterday I read two beautiful, powerful essays in the Chicago Tribune. One was written by Illinois state senator Jeanne Ives. Entitled Why we let our baby’s death come naturally, it was the story of the birth and death of Ives’ 5th child, Mark Anthony Ives.

Ives’ post was in response to one published in the Tribune, but written originally for the Washington Post by Rebecca Cohen entitled Why I had an abortion after 20 weeks.

These women’s stories start out so eerily similar, but they quickly diverge with a choice.

Cohen tells of the heartbreak she and her husband, already the parents of two older children, suffered when they learned at their 20-week ultrasound that their baby would not survive outside the womb. She says:

“In our baby’s brain cavity, where gray matter should have been visible, there was only black. The diagnosis was the same from every doctor: Something — we would learn it was not genetic or chromosomal — had caused two leaks in our baby’s brain, one on each side, destroying it almost entirely.”

She goes on to say that though they would have done anything to save their baby, he or she was “already gone” because he or she had no brain. She adds, “Adding to the pain, the brain stem was not affected, so the baby’s body was still moving involuntarily. But I knew there was no person in there anymore. I couldn’t sleep and could barely eat, and every time the baby jerked, I suffered and mourned.”

I truly cannot imagine how horrible this was for Mrs. Cohen, and my mother’s heart goes out to her.

Believing because of a lack of brain matter, that their baby was a “husk of a child,” the Cohens made the painful choice to end the pregnancy with an abortion at 21 weeks. “…the choice wasn’t just about me, she says. “I have young children who would have had to see their mother endure this torture and give birth to someone they would never meet. So we made the painful, but I believe merciful, decision to terminate.”

I have never been in Mrs. Cohen’s unenviable position, but this is where I disagree with her…I believe that her child was still a person with a soul, whether he or she had brain matter or not. And I believe that baby’s short life had a purpose. Because he or she still alive, with a heartbeat and a brain stem, I do not believe that he or she met a merciful end. Merciful would have been dying of natural causes after birth…not what happens in the violence of a late-term abortion.

After Jeanne Ives read Cohen’s story, she knew she had to tell hers. It is, I believe, the consummate answer to the question of what a terminally ill infant’s life is worth. Like Cohen, she writes of the heartbreak she and her husband felt at their fifth baby’s 20-week ultrasound when they learned that he would not survive long after birth.

“At the 20-week ultrasound, we found out that our son had a diaphragmatic hernia. Essentially, the diaphragm splits the abdomen in half with vital organs like the liver, kidneys and stomach below, and the heart and lungs above. If the diaphragm is incomplete, the organs below invade the space where lungs should develop. Few, if any, babies survive this deformity, especially if caused by a genetic abnormality.”

They explored all their options, but were told that there was no hope for baby Mark. Surgeons had tried fetal surgery for this condition with little success, but none of them would even attempt to operate on baby Mark because his condition was indeed genetic. The Ives’ accepted that their son would not live, and were now faced with a decision: would they continue the pregnancy even though they knew their baby would not survive long outside the womb? “At that point, our high-risk pregnancy doctor strongly suggested we abort the baby.” Jeanne Ives says. “In our conversation, the doctor spoke as if that were the obvious, most reasonable option. The thought of aborting Mark entered my mind for a few brief moments. How convenient, no one needs to think about this anymore, no increased medical expenses, no carrying the baby for 20 more weeks, no painful choice on how to respond to cheerful comments about my impending birth. The problem would just go away, and I could get back to caring for our other four boys.”

But she says, though it may have been the most convenient, she and her husband knew ending Mark’s life while he was still in the womb wasn’t the right choice. Indeed, she says, it wasn’t their choice to make, but God’s.

Did that make it EASY to bear the remaining 4 months of pregnancy,  carrying and loving a baby you would not get to keep? Of course not. There are so many times in life when the right choice is the hard choice, the one that requires more of us than we can bear to give. Ives candidly describes her pain:

The next four months I cried every day with a kind of grief I had never experienced. Our baby boy was alive inside me, kicking and rolling, and on the day we would welcome Mark to the world, he would die in my arms. I was not only grief-stricken, I was also scared. I was terrified to face the death of my own child.

But I never blamed God, and I never asked why Mark or why me. I understood more acutely than ever before the inescapable truth that suffering is part of this life, and it does not discriminate. What matters most in those dark and often lonely moments of fear and grief is how we respond to what sometimes feels like an unendurable burden.

Mark was born on April 28, 2002, and lived only 45 minutes.

Baby Mark was held by his parents, baptized by the doctor, bathed and dressed by nurses, had his footprints taken, and was “with the dignity he deserved as a human being created in the image and likeness of God.”

It grieves me that Mrs. Cohen’s child was not also given this dignity. He or she, too, was made in the image and likeness of God.

In her essay, Mrs. Ives seeks only to tell her story in contrast to Mrs. Cohen’s. She does not judge her and neither will I. I cannot IMAGINE the pain she faced. But Mrs. Ives can, and in my opinion, she chose a better way. A harder way, a more painful and inconvenient way. A way that affected her body, her other four children, and her emotional recovery. But as she says,

“Our decision is not unique. Every day, mothers and fathers receive equally tragic diagnoses and make the same decision. A just, merciful and compassionate society does not kill those who are imperfect or those whose medical condition is inimical to life. Not even the laudable goal of ending suffering grants to one person the right to kill another.

A just, merciful and compassionate society cares for those who suffer, including pre-born babies with serious and even fatal conditions and family members who lose their beloved babies on the day they first meet. And caring for very sick babies like our son Mark does not entail killing them.”

I couldn’t agree more. The freedom we have in this country to kill our children in the womb, whether they are terminally ill or not, will leave a legacy—is already leaving a legacy—that the most fragile, defenseless lives are worth something only if they are wanted just the way they are.

That is the stark reality we live with now—and it frightens me. Our society portrays itself as “just, compassionate, and merciful,” but just a quick look at the fighting on our Facebook feeds or the comments on an Internet news story will prove that is untrue.

If I were the God who had created each and every one of those lives in His image, I would not be so merciful to all of us who have allowed this. Christians, we must speak up for the unborn, but we must also be willing to provide for them if their parents choose life. Please pray about how you will do this, and then be prepared to LOVE BIG and GIVE MUCH.

It is the only way to change this legacy of choice.


Author’s note: I do encourage you to read both mom’s articles. I appreciate the fine writing, bravery, and candidness of both pieces, whether I agree with the author’s choice or not. 

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Jenny Rapson
Jenny Rapson is a follower of Christ, a wife and mom of three from Ohio and a freelance writer and editor. You can find her at her blog, Mommin' It Up, or follow her on Twitter.