Lessons Learned from Two Stories of Babies Diagnosed in Utero with Serious Genetic Syndromes

By Dave Andrusko

Archbishop Charles J. Chaput

Was it serendipity or something else that explains how on the same day a friend alerted me to a story that appeared in the Kansans for Life newsletter  another friend send me to a story that appeared this week on the Huffington Post? Both dealt with the same tragedy: a prenatal diagnosis revealed that the babies had Trisomy 18, a very severe genetic disorder that most often claims the baby’s life within a few hours, days, or years. But the responses were as different as day and night.

An update to ‘Terminal Diagnosis/Precious Life’” tells you the story of Ella Rose Morgan who was born late the afternoon of Easter Monday, April 9, 2012. The family had been devastated when, at 23 weeks,  the diagnosis of Trisomy 18, the same disorder that Rick Santorum’s three-year-old daughter has, was made. But note,

“We were told of Alexandra’s House, a Perinatal Hospice for Infants offering support to families experiencing a pregnancy in which the baby has been diagnosed with a terminal illness. Alexandra’s House has provided us with loving and compassionate support as we await the arrival of our Ella Rose. 

“We reached out to our family, friends, and church community. The prayers, meals, cards, emails and calls poured in and we were surrounded by Christ’s love and an overwhelming sense of His peace.”

I am not here to condemn Kimberly Cates Escamilla, who tells us at Huffington Post how she came to the decision to abort her child, after learning at 21-weeks, that her child had Trisomy 13. She is hurting greatly, which is one reason she lashes out at pro-lifers.

She writes that she was very much looking forward to having her second child and that she had avoided an amniocentesis because “risks abound with amnio: miscarriage, injury to the fetus and infection.” There is much in her story about avoiding inflicting pain to the baby, including here where she adds, “Nevertheless, amnio can give women the ability to make the decision before the fetus is developed enough to feel pain.”

After the diagnosis, Ms Escamilla tells us that

“Sophia was now moving regularly, and we were planning a 21-week D&E or induced birth. The horror pressed into us. We holed up in our house and grieved, deliberated and found scraps of distraction to keep us sane. We whispered to Sophia, my husband’s head lying lovingly on my belly. Postponing her imminent death was not an option. She would develop more sensory ability to feel pain. We filled out consent forms to have an autopsy and cremation performed on our unborn child.”

My strong suspicion is she knew that by 20 weeks, Sophia could already feel pain, or at least had heard that this was true. And that may have been one reason she chose an induction over a D&E which literally tears the baby apart. But the other reason is that by inducing the baby’s premature birth/death, they were gratefully able “to hold her tiny body, kiss her face and say goodbye in person.”

At this point Ms. Escamilla vents her rage at pro-lifers and any and all attempts to provide women with the opportunity to make an informed decision. “Instead of more punitive dictums,” she writes angrily, “we need sacred ways to honor both women and the unborn that are loving, free of dogma and condemnation.”

This appears near the very end and it reminded me that she had told us very early in her piece that she has foregone her “fundamentalist anti-abortion upbringing” and, after her “Christian marriage” (her quote marks) failed, she had found “a more balanced spiritual path — filled with compassion, yoga, meditation and appreciation of the positive tenets of many religions.” And that she never expected herself to be in a position where she would have an abortion, even wondering at one point, “Were abortion clinics providing too much of a safety net for irresponsibility?”

After what she went through, her point, obviously, is that no one should ever “second-guess” a decision to abort.

But it is not second-guessing to try to help Ms. Escamilla—and, more importantly, anyone else who finds themselves in these tragic circumstances—to understand that there was another way, a way that honored Sophia and tapped into Ms. Escamilla’s nobler instincts.

And that would have been to celebrate whatever time they would have with Sophia. To sing to her in anticipation of her arrival on a journey no matter how brief. To remind herself that while genetically Sophia may have been “imperfect,”  they could have chosen to make her the recipient of a perfect love.

Last January Archbishop Charles Chaput delivered the Keynote Address to the 13th annual Cardinal O’Connor Conference on Life, which was held on January 22 at Georgetown University in Washington, DC. He was talking about children with special needs, most of whom would live much, much longer than Ella Rose and Sophia. But the wisdom of Archbishop Chaput’s  moving remarks made just prior to the March for Life rings equally true in this situation as well:

“These children with disabilities are not a burden; they’re a priceless gift to all of us. They’re a doorway to the real meaning of our humanity. Whatever suffering we endure to welcome, protect and ennoble these special children is worth it because they’re a pathway to real hope and real joy. Abortion kills a child; it wounds a precious part of a woman’s own dignity and identity; and it steals hope. That’s why it’s wrong. That’s why it needs to end. That’s why we march.”

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