No parent wants to be faced with the news that his or her child will be born with a terminal illness. For a family receiving this diagnosis, this news is chilling and heavy.
Many mothers and fathers find themselves in this situation after they receive the results of a prenatal test; they are then given the option to either continue the pregnancy with routine medical care or to terminate the pregnancy. But there is a third option: perinatal hospice.
Unfortunately, most couples are not presented the option of perinatal hospice and opt instead to terminate the pregnancy; only 20 percent of these couples opt to bring the pregnancy to term.
These parents are often pressured to make the decision quickly in light of the complications surrounding late term abortions. Yet the statistics show that parents who choose abortion because of a prenatal diagnosis have great regret. The intensity of their grief is so great that it can cause psychological harm.
This doesn’t have to be the case; perinatal hospice is a nurturing option for both the child and the family. When given the option, eighty percent of these parents choose perinatal. These programs support the family emotionally and give them the tools to say good bye to their baby.
This is in stark contrast to the abrupt separation that occurs when a pregnancy is terminated. Perinatal hospice gives the family time to hold the newborn, and to collect photos and mementos to remember him by. These little treasures can be a beautiful gift during the time of bereavement that follows the child’s passing. And the gift of time is invaluable.
Such was the case for Jody Kyser, whose baby was diagnosed with a terminal chromosome disorder. She was put in contact with a perinatal care program that answered her questions, provided support, and helped her and her family prepare for the rich but trying times ahead.
Jody and her family were able to savor the short time with little Chloe Joy. She was even able to come home from the hospital in enough time to go to church with the family on Easter Sunday. The Kyser family will always hold on to these memories.
Every couple should be made aware of the option of perinatal hospice when they are given the tragic news of their unborn child’s fatal anomalies. Currently, only the state of Minnesota requires that this option be given to families who find themselves in this situation.
To help remedy this disparity, Americans United for Life just drafted the Perinatal Hospice Information Act Model Legislation & Policy Guide to be used as a prototype for state legislators who wish to ensure that families are aware of the support that is available when they find themselves in this tragic situation.
 M. D’Almeida et al., Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition, 11 J. Amer. Physicians & Surgeons 52 (2006); B.C. Calhoun & N. Hoeldtke, The Perinatal Hospice: Ploughing the Field of Natal Sorrow (2005), available at https://www.choicesmc.org/pages/pregnant/sub/perihospcalhoun1.php (last visited June 17, 2010).