Perinatal hospice offers abortion alternative

Jason and Amy Wegener knew something was wrong when their midwife and their OB-GYN physician suggested they see a specialist. “He kept using the term ‘lethal anomaly,’” Amy said. “He said that we should just go ahead and abort the baby because it wouldn’t live and it would be difficult.”

Several states have passed laws protecting babies with Down syndrome or other congenital conditions from abortion, but often babies with more severe disabilities aren’t included in those protections. In April, Arizona Gov. Doug Ducey signed a law protecting babies from abortions due to genetic disorders, with the exception of lethal anomalies.

On the day of the 9/11 terror attacks in 2001, Jason and Amy’s unborn daughter, Ashlynn, was diagnosed with triploidy. While a baby with Trisomy 13 or Trisomy 21 (Down syndrome) has a tripling of the 13th or 21st chromosome, a baby with triploidy has triples of every chromosome.

“It seemed like everyone else’s world was falling apart because of the national news, and our world was falling apart because of the diagnosis,” Jason said.

The Wegeners didn’t want to abort. Jason’s sister told them about a perinatal hospice program at Choices Medical Clinic in Wichita, Kan., where the Wegeners lived. “I had never heard of that, didn’t know what it was,” Jason said. He and Amy scheduled an appointment.

Choices Medical Clinic offers the counseling and pregnancy testing common to most pregnancy resource centers. But Choices also offers a perinatal hospice program for families whose unborn baby has a terminal diagnosis. Families receive help with a birth plan and funeral arrangements, multiple sonograms, and mementos like a custom teddy bear with their baby’s heartbeat recorded inside.

When the baby arrives, Choices staff help provide more memory items: a mold of the child’s hand or foot, professional photography and a Shutterfly scrapbook, and the baby’s footprints in a Bible. Staff keeps in touch with families for a year after the birth, sending Mother’s and Father’s Day cards and an ornament with the baby’s picture or sonogram image at Christmas.

Choices typically has 10-12 perinatal hospice clients in a year. Some babies go home for a few weeks or even months, and at least one baby surprised her doctors and is now a happy 4-year-old. But many die before birth or soon after.

Professional photographer Michael Bankston had never done birth photography before agreeing to photograph a perinatal hospice birth for a family at Choices. After the birth, Bankston took pictures of the grandpa, a farmer, gently picking up his grandson. He photographed three generations standing there by that bassinet. “That moment I will never forget,” Bankston said. “You’ve never seen anything like that in your entire life. Just the love, the gentleness, the tenderness.”

The baby lived for three hours.

Bankston felt numb as he left the hospital. “Everybody’s going about their business like they normally would, not knowing what had just happened on the third floor at St. Joseph in this particular room,” he said. Years later he still chokes up as he talks about it. “I wanted to stop everybody and say, ‘Stop, just for a minute. You’ve got to understand what just happened.’”

A few weeks before Ashlynn’s due date, Jason and Amy returned to Choices for another sonogram, this time bringing their five older children to meet their sister. The nurse couldn’t find the baby’s heartbeat. The Wegeners went to the doctor that afternoon, and he confirmed Ashlynn had died.

Ashlynn Caroline Wegener was born on October 11, 2001. The family still shows off the photo book Choices staff made for them. “They ministered to us and they honored the life of our baby,” Jason said, “when others weren’t really willing to or didn’t find it advisable,” Amy finished.

The Wegeners moved to Katy, Texas, a few years ago, and they would like to help start a perinatal hospice program at their local pregnancy resource center.

Board chairman and medical director Dr. Scott Stringfield volunteers weekly at Choices. “It really is a paradigm change,” Stringfield said. “Crisis pregnancy clinics many times are just relegated to be facilities for diapers and layette sets and things like that, when they could do so much more.”

Stringfield said a supportive board and a physician give center staff members the backup they need to offer a perinatal hospice program. “There are very few physicians that will step in this door and do this sort of work,” he said. “And they miss out.”