Diagnosed to Die: Hospice Extends to Babies

Facilities Give an Alternative in the Face of Pressures to Abort

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By Kathleen Naab

NEW YORK, DEC. 2, 2007 (Zenit.org).- Doctors told Mary Kellett that her son Peter was not worth the resources it would take to treat the chromosomal abnormality they detected before his birth.

"Wrap him up in a blanket and let him go," they advised. But Peter's older sister discovered on the Internet that not all babies with trisomy 18 -- the condition affecting her little brother -- died before birth. In fact, she found out, some live two or three decades.

Peter's family did not want to abort him. Mary Kellett said the strong discouragement to treat Peter "was and remains the most painful feeling I have ever felt as a mother. We were told he would never contribute to society and would live a life of suffering."

But, she affirms nearly three years later, "Peter is such a great gift to us and to so many. He is a happy, sweet little boy who loves reading the Bible, listening to music and playing with his brothers and sisters. He is not suffering; in fact Peter is the happiest person I have ever met. These special babies contribute to society in the most important way possible: They contribute to our souls."

After her experience with Peter, Mary Kellett decided to found Prenatal Partners for Life, a support group for families who receive adverse diagnoses before or after birth.

"We try to take away some of the fear that these parents often feel and encourage them to embrace the destiny God has planned for their baby, whether it is a few minutes of life or decades," Kellett explained.

Prenatal Partners for Life is one of a host of Web sites and organizations that offer support to parents expecting an ill or dying child.

Wrong

Prenatal diagnoses of illness are more and more common. And yet, even advanced medical technology can fail. The ANSA news agency reported from Florence in March that a healthy fetus was "mistakenly aborted." The baby boy was diagnosed in the womb with a defective esophagus. The mother chose to abort, and the procedure was performed at the 22nd week of pregnancy. However, during the abortion, the doctors realized the baby, who weighed just 1.1 pounds, was healthy, so they quickly moved to resuscitate the child. The boy died five days later from a brain hemorrhage incurred during the abortion.

A June case from Milan widely-reported in August was different. Pregnant with twins, a mother was told that one of the babies had Down syndrome. She wanted the child aborted. They did another examination and performed the procedure. Soon after, the mother was given news of what the hospital called "a terrible fatality": Between the examination and the abortion, her healthy daughter had moved into the place occupied by the twin. The healthy baby had been aborted; the one with Down syndrome continued alive in her womb. The mother chose to abort the second twin too.

Mimi Citarella told ZENIT these cases are all too common. Her child is either a "miracle or at minimum another medical misdiagnosis," she explained. More than a dozen specialists examined the baby en utero and came to the same conclusion: She would have major physical limitations and likely mental as well, ranging from quadripalegic to "vegetable." "The prevailing thought we received from the medical community was 'cut your losses' and end the pregnancy," Citarella said. "We couldn't think of it, of course, and now, we have precious Claire, who […] is a perfect, normal, healthy 15-month-old toddler."

"Tests can be wrong," Kellett affirmed, "and diagnoses can be wrong. Very often, things are not as severe, or in some cases, totally misdiagnosed. We really live in a culture of death where we have gotten so selfish that if there is a possibility of not having the perfect child, we kill it."

"Many times doctors give the worst-case scenario and pressure mothers to abort or induce early to cause the death of their baby," she continued. "Women have been told they need to complete an unfinished miscarriage by aborting, or that it is in their best interest to say goodbye early and try and get pregnant with a healthy baby, as if their baby is so easily replaceable."

Something different

The situation confronted by parents of children with adverse diagnoses motivated Dr. Byron Calhoun, vice chair of the department of obstetrics and gynecology at West Virginia University-Charleston, to establish what he calls perinatal hospices, specifically for those babies who are expected to die before or shortly after birth.

Perinatal hospice comes into play when a baby is diagnosed with terminal illness before being born, he explained.

Calhoun pioneered this interdisciplinary approach to supporting the family of a baby with a fatal diagnosis. The ideal, he said, includes maternal-fetal medicine physicians, the local obstetrical provider, ultrasonographers, neonatologists, nurses, chaplains and social services, all working to provide a supportive environment for the family.

Calhoun affirmed, "Perinatal hospice is needed to provide an alternative to patients who do not desire termination of pregnancy. There is data to support that patients who terminate pregnancies suffer more emotional trauma than those who carry their pregnancies to a natural outcome."

Twelve years after the first hospice was initiated, there are now 50 programs in the United States: 26 hospital/clinic-based, 16 hospice-based and eight free-standing.

Ignorance

Calhoun acknowledged that "there is tremendous pressure by physicians, genetic counselors, and family members to perform abortions."

But, he says, "much of this stems from ignorance of hospice and the mistaken thought this will help the patients. Malpractice is part of the issue, but the majority of the issue is to 'do something' and to 'get it over with.' This approach does not work and actually traumatizes patients more."

The doctor lamented that many physicians and organizations are not aware of perinatal hospice and are often ill-equipped to deal with all the issues necessary to care for these patients and their families.

He said that in cases where perinatal hospice is offered, some 75% to 85% of patients choose it.

"Also," Calhoun affirmed, "physicians, residents and students need to understand that there is not increased risk to women to carry these pregnancies and deliver them. In fact, the emotional well-being and mental health of the women is worse with abortion."

For the mom

Kellett agreed that carrying the baby to term is better for the mother, regardless of the baby's diagnosis.

"It is always better psychologically to carry a sick or dying baby for as long as God allows," she said. "Women who abort often spend the rest of their lives living with regret and question if they did the right thing. I have never met a mother who has said she has had too much time with her baby.

"I always tell women who are thinking of aborting that they have no idea how many people their baby will touch and the lessons they will teach in the remaining months of the pregnancy and for the time they live. It is always better for a mother’s emotional health to embrace God’s plan and purpose for their child and not cut short his or her life. Beautiful memories can be made with that time."

[Carrie Gress contributed to this article]