Perinatal Hospice:
Giving Terminally Ill Babies and Their Families an Alternative to Abortion

By Liz Townsend

The news devastated B.J., a single mother expecting her fifth child. Prenatal tests showed that her unborn baby had Trisomy 13, a chromosomal disorder that is almost always fatal.

In today's increasingly high-tech medical world, such diagnoses are more and more common. Emotionally vulnerable at such times, parents are easily swayed by the opinions of diagnosticians and physicians.

Sometimes overtly but more often subtly, the message is sent that everyone - - the family and the baby - - is "better off" if the child is aborted. After all, the child is going to "die anyway," parents are told.

Having already suffered through the deaths of two of her children in accidents, B.J. did not think she could handle bringing the baby to term only to see him die. Considering an abortion, she called a local crisis pregnancy center for help. Knowing that an abortion would do nothing to lessen her grief, the center referred B.J. to Alexandra's House, a new kind of hospice in Kansas City, Missouri.

"Perinatal hospices" are a relatively new but important development whose noble goal it is to support parents during the emotional turmoil that is a part of pregnancy and birth of babies diagnosed with serious, if not necessarily always fatal, disorders. They provide an alternative to the "solution" of abortion, a decision that often only heightens the guilt of parents who may already be blaming themselves for producing an " imperfect" child.

Alexandra's House founder Patti Lewis followed B.J. throughout her pregnancy, providing spiritual, emotional, and practical support. B.J. and Lewis developed a birth plan together, went to medical appointments, and prepared for labor and delivery.

Lewis said B.J. asked her to let her hold her baby only if he survived the birth, fearing that she couldn't bear to see him if he didn't. The baby boy died during labor.

But B.J. had a change of heart. Instead of distancing herself from her baby, and perhaps grieving the rest of her life for this omission, she held her precious child in her arms for the first and final time. A priest baptized the baby, with Lewis standing as godmother, and pictures were taken of the baby with family members.

B.J. named her baby Elijah, and Lewis raised funds to pay for Elijah's burial and for a headstone for the graves of B.J.'s three deceased children.

The support provided by Lewis and the perinatal hospice afforded B.J. and her baby the peace and dignity of a natural pregnancy and birth, instead of a cold and clinical death at the hands of an abortionist.

"The perinatal hospice is really an advance in the care of pregnant women," said Lewis. "It is a grueling time for them - - they're grieving yet having to care for the baby at the same time. We follow the families' lead, and provide the types of support they need."

Lewis said that she still talks to B.J. just about every week. She continues to help her recover from Elijah's death and give B.J. the assistance she needs for herself and her family.

Perinatal hospices are a direct response to modern medical technology. Amniocentesis and other tests provide more diagnoses of severe genetic anomalies before birth but without the means to cure or treat them. These conditions, such as anencephaly and Trisomy 13 and 18, often make it impossible for the babies to live more than a short time after birth.

Physicians who encourage parents to abort these babies often think it is the "easy" way out. "Doctors are so uncomfortable in these situations, they don't know what to do," said Dr. Byron Calhoun, program director of maternal-fetal medicine at Madigan Army Medical Center in Tacoma, Washington, which has had a perinatal hospice since 1995. "They think there's no risk with abortion, that the problem will be over."

Equally important, physicians are convinced they are "helping" the parents if they "save" them the grief of carrying a baby doomed to die. "But every parent in our program has thanked us for the time they had with their baby, no matter how short or long it was," Dr. Calhoun said.

Lewis's experience has also shown that carrying the baby to term helps parents deal with the grief that is inevitable when a child dies. "If they abort the baby, the parents will always wonder whether the diagnosis was correct - - whether they murdered a healthy child," she said.

"But if the baby is born, they are able to hold the child, videotape him, baptize him, and even take him home if he lives for a short time," Lewis explained. "They know that they did everything they could. They gave God a chance to heal the baby; gave every opportunity for a miracle."

Calhoun and his colleague Dr. Nathan Hoeldtke have written several technical papers for academic journals describing the perinatal hospice. But if this new concept is to take hold, he knows it must be presented to the right audiences. That is why Calhoun speaks to groups across the country, introducing the idea to doctors and hospitals in the hopes that more medical centers will establish these programs.

He readily acknowledges that the perinatal hospice is more expensive and time-consuming than abortion, but said that "it's simply the right thing to do." Calhoun added, "If hospice services are OK at the end of life, a hospice at the beginning of life is OK too."

While such care was offered informally for years at the Madigan Army Medical Center, the perinatal hospice was formally established in 1995. The program is nothing if not multi- disciplinary.

Sonographers, maternal-fetal medicine specialists, nurses, neonatologists, chaplains and pastors, social service providers, and others all play vital roles in caring for mother and child during the pregnancy, which is often the only time they will have together.

Both mother and unborn baby are closely monitored at all times, with repeat ultrasounds and other tests conducted to confirm the diagnosis and to follow the progress of the pregnancy and delivery. If requested, autopsies or other tests are performed after the baby's death to give the parents as much information as possible about their child and possibilities for future pregnancies.

But beyond such medical help, the hospice program is mainly "high touch, not high tech," Calhoun said. Family members and other children are involved, money is raised if the family is in need of funds for a funeral, and other forms of support are provided.

Although a hospice program located inside a hospital provides the most direct and easily accessible care, other groups can offer similar programs by establishing partnerships with hospitals and doctors. Lewis, for example, said that Alexandra's House in Kansas City is working to build relationships with hospitals in the local area, which would refer women faced with a prenatal diagnosis of a fatal condition to the house.

Dr. Eugene W.J. Pearce, associate professor of obstetrics and gynecology at Truman Medical Center, is the medical adviser of Alexandra's House. Pearce heard Calhoun speak in 1998 and was immediately impressed by the perinatal hospice concept.

"It's meeting a need that no one is currently meeting," Pearce said. "Most late-term abortions done for fetal defects are done with the idea to reduce the suffering of the parent." But this ignores a crucial consideration - - "the parents will always remember that they took their baby's life."

Excited about the concept and looking for ways to bring the idea to the Kansas City area, Pearce met Patti Lewis, who had already begun planning Alexandra's House. Lewis's involvement was spurred by her family's experience.

Lewis's niece gave birth in December 1994 to Alexandra, who had a rare and fatal genetic defect. "She lived for only six weeks," Lewis said. "Those days were painful, rewarding, and unforgettable."

Lewis said she felt called by God to found a program in Alexandra's name to help other families facing such a difficult time. Currently funds are being raised to establish a home where families can stay during the pregnancy. Babies who survive birth but are dying can live there with their parents during their short lives. With Pearce's help, Alexandra's House held a fund- raising dinner in April 1999 that featured a talk by Calhoun.

Another version of the perinatal hospice concept can be found in Choices Medical Clinic of Wichita, Kansas. It is located next door to the notorious abortion clinic of George Tiller, which is known for performing late-term abortions.

Choices provides more typical crisis pregnancy center services such as free pregnancy tests, counseling, and education. But in response to Tiller's specialty, the center also offers free ultrasounds and perinatal hospice support to the parents if the unborn child has a life-threatening condition.

After an ultrasound confirms the diagnosis, "we come alongside the mother, involve the family, a team of physicians, social workers, clergy, and even the support of other women who have been in similar circumstances," according to Choices Medical Clinic Quarterly. "The mother is prepared for the eventual outcome, their medical condition is monitored, the baby is delivered, and post-partum emotional support is provided."

Parents who have been assisted by the prenatal hospice program expressed thanks for Choices Medical Clinic's help at their time of crisis. A letter published in the Quarterly told of an 18- year-old mother's gratitude for the clinic's assistance as she carried and gave birth to a baby girl suffering from anencephaly.

"If it wasn't for you guys telling me it wouldn't hurt to carry her, I wouldn't have been lucky enough to have felt her grow and move," wrote the young mother. "I feel so much better knowing I spent as much time as I could with her and no one took her besides God and He took her when he thought it was time. ... I'll never forget my first daughter, she's a very special girl."

While Choices Medical Clinic's perinatal hospice program began as an answer to Tiller's long-standing practice of late-term abortions, a recent policy change by a hospital in Wisconsin provided the impetus for still another new perinatal support group.

In October 2000 Waukesha Memorial Hospital announced that it would begin to abort babies who have conditions "incompatible with life," according to Marianne Linane, executive director of National Association of Pro-Life Nurses and executive assistant to Wisconsin Right to Life's executive director. Previously, the hospital only performed abortions when the pregnancy threatened the life of the mother.

Pro-lifers immediately protested the hospital's decision, collecting 9,000 signatures in Waukesha County condemning the new policy. Hoping to provide another option to parents whose babies might now be aborted under the hospital's guidelines, Wisconsin Right to Life (WRL) formed LifeLinks.

LifeLinks will refer women considering abortion to a growing network of volunteers who would provide any assistance needed. The volunteers include women who have experienced prenatal diagnoses of lethal conditions, physicians, social workers, pregnancy counselors, and ministers.

Linane said that LifeLinks has not yet received any referrals, but Waukesha Memorial Hospital has not started performing abortions on babies with life-threatening conditions.

But WRL has been "inundated with calls and messages" expressing interest in becoming part of the LifeLinks network and in the perinatal support group concept, Linane added. The group will soon meet to discuss expanding the program.

The perinatal hospice provides a loving, pro-life alternative to the current fate of most unborn babies diagnosed with fatal conditions: abortion. Instead of facing the trauma of knowing they took an active role in their baby's death, parents can instead give their babies the gift of life, even if only while in their mothers' wombs or for a few minutes after birth.

"These parents are allowed the bitter-sweetness of their child's birth and too soon departure," Calhoun wrote in Frontiers in Fetal Health. "Grief lessens as time passes and parents can rest, secure in the knowledge that they shared in their baby's life, and treated their child with the same dignity as afforded a terminally ill adult.

"'As you do not know the path of the wind or how the baby is formed in the mother's womb, So you cannot understand the work of God, the Maker of all things.' Ecclesiastes 11:5"