A Life-Limiting Diagnosis During Pregnancy: A Mother’s Perspective

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We learned to walk through an adverse pregnancy diagnosis when a routine ultrasound revealed that our baby girl had a fatal disorder.

broadcast icon Listen to Josh and Laura Huene provide hope and encouragement to parents dealing with an adverse pregnancy. Dealing With Loss and Grief in an Adverse Pregnancy.


When our journey with Pearl here on earth was over, my doctor, who is also a personal friend, said to us, “Now I see why you did this the way you did.”

A precious friend, who is also a labor and delivery nurse, said to me, “I understand why you did this, and now I see why you love her so much. I will never tell anyone to terminate after a fatal diagnosis again.”

Let me start at the beginning of our journey. …

It is March 22, 2006, when we go in for our routine 20-week ultrasound. We are informed that our precious unborn child, Pearl, has alobar holoprosencephaly with severe facial anomalies. We are devastated by the news. We have three beautiful children and were thrilled to be having our fourth. We do not know how we are going to navigate our way through these uncharted waters.

As I lay on the table in the perinatologist’s office, he tells us her condition is fatal and asks us what we plan to do.

“Do you think we should terminate?” we ask.

“Yes,” he says.

No other options are presented to us. I convey to the doctor my belief that this life is a gift. We will cherish each moment we have with her. We will not terminate. He informs me of the risks, then steps out of the room for a few minutes to let us “think about our decision.”

There is no decision to be made. We are going to honor Pearl’s life by carrying her for as long as my body will allow. We trust that God is in control of a seemingly out of control situation.

The perinatologist makes sure that we know time is not going to change the diagnosis. They can do nothing to make this better.

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