A perinatal hospice offers an alternative to abortion
Jason and Amy Wegener knew something was wrong when their midwife and obstetrician-gynecologist suggested they see a specialist. “He continued to use the term ‘deadly anomaly’,” Amy said. “He said we should just go ahead and abort the baby because he wouldn’t live and it would be difficult.”
Several states have laws protecting babies with Down syndrome or other congenital diseases from abortion, but babies with more severe disabilities are often not included in these protections. In April, Arizona Governor Doug Ducey signed a law protecting babies from abortions due to genetic disorders, except fatal abnormalities.
On the day of the September 11, 2001 terrorist attacks, 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 each chromosome.
“It seemed like everyone’s world was falling apart from the national news, and our world was falling apart from the diagnosis,” Jason said.
The Wegener family did not want an abortion. Jason’s sister told them about a perinatal hospice program at Choices Medical Clinic in Wichita, Kan., Where the Wegener’s lived. “I had never heard of that, I didn’t know what it was,” Jason said. He and Amy made an appointment.
Clinique Médicale Choices offers pregnancy counseling and testing common to most pregnancy resource centers. But Choices also offers a perinatal palliative care program for families with an unborn baby with a terminal diagnosis. Families receive help with a birth plan and funeral arrangements, several ultrasounds, and keepsakes like a personalized teddy bear with their baby’s heartbeat recorded inside.
When the baby arrives, Choices staff help provide more pieces of memory: a mold of the child’s hand or foot, professional photographs and a Shutterfly album, and the baby’s footprints in a Bible. . Staff keep 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 photo or the ultrasound image at Christmas.
Choices typically has 10 to 12 perinatal care clients per year. Some babies come home for a few weeks or even months, and at least one baby has surprised their doctors and is now a happy 4-year-old. But many die before birth or soon after.
Professional photographer Michael Bankston had never taken a birth photograph before agreeing to photograph a perinatal birth in a hospice for a family in Choices. After the birth, Bankston took photos of grandfather, a farmer, gently picking up his grandson. He photographed three generations standing near this cradle. “That moment I will never forget,” Bankston said. “You’ve never seen anything like it in your life. Just love, gentleness, tenderness.
The baby lived three hours.
Bankston felt numb as he left the hospital. “Everyone is going about their business as usual, not knowing what just happened on the third floor of Saint-Joseph in this particular room,” he said. Years later, he still chokes on talking about it. “I wanted to stop everyone and say, ‘Stop, just a minute. You have to understand what just happened.
Weeks before Ashlynn’s due date, Jason and Amy returned to Choices for another ultrasound, this time bringing their five older children to meet their sister. The nurse could not find the baby’s heartbeat. The Wegener’s went to the doctor that afternoon, and he confirmed that Ashlynn was dead.
Ashlynn Caroline Wegener was born on October 11, 2001. The family still shows the photo book that the Choices staff made for them. “They served us and honored our baby’s life,” said Jason, “when others weren’t really willing or found it undesirable,” Amy said.
The Wegener’s 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’s really a paradigm shift,” Stringfield said. “Emergency pregnancy clinics are often relegated to facilities for diapers and layette sets and things like that when they could do so much more. “
Stringfield said a board of directors and a doctor gave staff at the center the support they needed to deliver a perinatal hospice program. “There are very few doctors who will walk through that door and do this kind of work,” he said. “And they are missing.”