A Primer on Perinatal Hospice

[Editor’s note: Texas gubernatorial candidate Wendy Davis recently disclosed that she had an abortion after her daughter was prenatally diagnosed with a neurological disorder. This post had already been written and the timing is a coincidence.]

Last week, in 8 Things “After Tiller” Left Out, we made the point that although the film emphasizes cases in which the unborn baby has an extremely serious health condition and is unlikely to survive long after birth, such extreme circumstances are not the majority of late-term abortions.

One our readers responded:

I am continuously disappointed in the pro life movement that supposedly “cares so much about women” for not taking a second to recognize these devastating situations and the heart break the families endure. Everyone is so quick to dismantle every shred of compassion they felt during the film, but that does a great injustice to the brave people who bared their soul in order to show us what these experiences are really like. . . . [You can] still be pro life, uphold the unborn, and show love to families who also wanted life and love for their babies but that chance was ripped away from them, and they will never be the same again.

Of course, she’s 100% right. Pro-lifers were right to be angry about the pro-abortion misrepresentations being propagated with their tax dollars on PBS, but the needs of families hit with a lethal prenatal diagnosis got lost in the shouting.

As pro-lifers, we naturally focus on the fact that abortion kills; the assumption is that in the absence of abortion, the child’s life is saved. That assumption is usually valid—but, tragically, not always.

I am not speaking here of prenatal diagnoses like Down Syndrome or cystic fibrosis; people with disabilities deserve the chance to live and the pro-life movement is right to condemn the high rates of abortion for such conditions. But in situations where the child is bound to die within days, hours, or even minutes of birth, abortion may be viewed not as homicide, but as a mere matter of timing. You can still argue that it’s wrong, but at the very least, we must acknowledge that abortion in such cases is ethically murkier than the typical abortion chosen for socioeconomic reasons.

Society writ large has failed to appreciate the unique struggles of families facing lethal prenatal diagnoses. In these situations, the societal pressure to have an abortion can be immense:

The Children’s Hospitals [perinatal hospice] program here [in Minneapolis] is called Deeya, Sanskrit for “a small light.” Since 2001, Deeya has served six to eight families a year, who mostly hear of it from genetic counselors and midwives. At the Birth Center of United Hospital in St. Paul, about 24 families a year choose the perinatal hospice approach.

The numbers are growing but small, said Jody Chrastek, Deeya’s director, because many health care workers do not know the program exists, and some doctors are hostile to families continuing the pregnancies.

“Some have been told they’re wasting their time for a baby that would be dead anyway,” [author and perinatal hospice advocate Amy] Kuebelbeck said. “Some have been told they’re wasting the doctor’s time.”

People often say painful things to the family without even realizing it:

Many have family and friends who are mystified as to why a couple would continue a pregnancy knowing their child will die. Loved ones often fear that by continuing on, the parents are simply delaying their grief or torturing themselves. What will they say to strangers who casually ask if the nursery is ready? And what if bringing the baby into this world causes the child suffering?

But for some, the pregnancy feels precious because it may be the only time they’ll get to be with that child, says [genetic counselor Cheri] Schoonveld. “I think most people who have continued want to experience as much time with the baby as possible and want to hopefully meet the baby.”

Other families may have religious reasons that guide their choice. Sometimes parents may hold out a hope that somehow the terminal diagnosis was wrong. And others just don’t want to be the one who decides when their baby dies.

“Don’t assume we’re Luddites or religious fanatics,” Kuebelbeck says. “Don’t assume we’re saints. We’re just parents doing the best we can.”

In addition, parents may reject abortion because giving birth to the child allows the family to arrange for organ donation; although the child’s life is brief, he or she can leave a tremendous legacy by saving the lives of other newborns.

The chief way to meet these families’ extensive needs is through perinatal hospice programs. These programs are much like a regular hospice, but specialize in patients who have not yet been born. They help parents make arrangements for the birth and death of the child so that they can maximize their one-on-one interaction with the child for whatever short time they have. They help parents, the baby’s siblings, and other family members grieve. They help arrange for organ donations. In a word, they practice compassion.

For more information, I highly recommend PerinatalHospice.org. Although not officially a pro-life project, the website collects crucial resources for parents who reject abortion in these tragic circumstances.