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I'm Pregnant, But my Child is Not Expected to Live... How to Counsel Young  Families in Need

by Father Frank Pavone,  founder and director of  Priests for Life

The question of how to respond to a medical problem with an unborn child has  become more real in our day because it is more possible to find out that there is a  problem before birth. Modern methods of visualization of the unborn child have increased our  ability to diagnose medical conditions in the womb. In an increasing number of cases, we  are able to intervene to treat and sometimes cure these problems. At the same time,  many such conditions cannot be cured.

These issues arise more frequently than ever in pastoral counseling. We  therefore continue our series on counseling by providing reflections, from a  philosophical and medical perspective, that can help us counsel those pregnant with a child who  is dying.

Philosophical response: Why Carry a Dying Child?

The diagnosis that an unborn child has a life-threatening disease or anomaly  is a particularly heavy cross for a family to bear. The hopes and dreams that  accompany a pregnancy are thrown into chaos, and the joy of the anticipation of the  child's birth becomes intense anxiety.

But there is one factor that does not change: the love which the family --  and the rest of us -- can give to that child.

 Some wonder why a baby who will die shortly should even be brought to term.

But are we not all to die shortly? How are we to evaluate what is long and  what is short when we compare life to eternity? Nobody knows how long he or she is to live,  nor do we measure the love we give based on the length of life.

 Why should a baby who will die shortly be brought to term? Because we love  that child for as long as that child lives, whether life be measured in decades or  minutes. Why should we be there for anyone who is suffering? Why should we share in their  pain? Why should we stay up all night for a sick toddler? Why should we wait by the  bed of a loved one in the hospital? Why should we accept death for anyone, including  ourselves?

The alternative to accepting death is to try to control it by giving  ourselves the authority to take life before life will make too many demands on us. Hence we have  abortion, infanticide, and euthanasia. Just take control. Don't let life hit you too  hard. Eliminate the suffering by eliminating the person.

The late Terence Cardinal Cooke wrote a beautiful letter for Respect Life  Sunday in 1983. Its eloquence was enhanced by the fact that he was dying of cancer as  he wrote it, and died two days before it was read in all the parishes of the  Archdiocese of New York. He wrote, "The 'gift of life,' God's special gift, is no less beautiful  when it is accompanied by illness or weakness, hunger or poverty, mental or physical  handicaps, loneliness or old age. Indeed, at these times, human life gains extra  splendor as it requires our special care, concern and reverence."

His words are true no matter how old or young we are. Love means welcome --  that is, I open my heart to you as you are -- not wanting -- that is, you must meet my  needs and expectations.

One of the most beautiful examples of this in our day is Karen Garver  Santorum, whose book, "Letters to Gabriel," tells the story of her medically complicated  pregnancy and her child whose life was so short. She and her family loved their child in his  frailty in the womb. Describing his birth, she writes, "As sad as it was, the time with you  gave us a chance to love and care for you." And that is the very meaning of life.

Medical response: Perinatal Hospice

There is a new appreciation for the grief of parents who lose a child before  birth. While the tragedies of stillbirth and neonatal death are common, the first studies  investigating maternal responses to these tragedies were not published until 1968 and 1970, respectively. Before that, these losses were often viewed and handled by  society as "non-events."

Now there is a growing acknowledgement these are losses of a real person.  Whether that real person is in the womb or outside the womb, he/she deserves our best  care, he/she can be loved, and he/she is grieved when lost.

The response to the terminal illness of adults and children has led to the  development of hospice care (adult and neonatal), providing holistic physical and emotional  support for dying patients and their families. More recently, the concept has extended to  the unborn child, giving rise to "perinatal hospice."

 Dr. Byron Calhoun, President of the American Association of Pro-life  Obstetricians and Gynecologists (AAPLOG), is a key advocate of this concept. He writes,  "Perinatal hospice...focuses on the persons involved...and places the family in the  central arena of care. It provides a continuum of support for the family from the time of  diagnosis until death and beyond. It is marked by a cognizance that 'dying involves real  people, even unborn fetuses; [and that] significant relationships are disrupted and  familiar bonds are severed.' Hospice allows time -- time for bonding, loving, and losing; time  so that the entire course of living and dying is a gradual process that is not jarringly  interrupted" (Nathan J. Hoeldtke, MD, and Byron C. Calhoun, MD, "Perinatal Hospice,"  American Journal of Obstetrics and Gynecology, vol. 185 no 3 [Sep 2001]; internal  quote from Knapp RJ, Peppers LG. Doctor-patient relationships in fetal/infant death  encounters. J Med Educ 1979; 54:775-80).

Dr. Calhoun reports that among a group of 32 patients whose children had  lethal fetal anomalies, 27 (84%) chose perinatal hospice care. All are all positive about  the experience and grateful for the time they were able to spend with their  infants before they died. The time of death ranged from 20 minutes to 2 months after birth.  There were no maternal complications.

 We at Priests for Life are grateful for the work of Dr. Calhoun and for his  friendship. He is eager to consult with those in the medical community who  want to set up perinatal hospice programs. He is also working with us at Priests for Life to enable  priests to more knowledgeably refer people to these options. For more information, visit http://www.aaplog.org/perinatalhospice.htm

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