Amy Horlander was preparing to move her family from Indianapolis to Cary, N.C., last spring. At the same time, she was expecting her family’s 10th child. It was a busy time, to say the least, but it was a happy time, too.
Then, shortly before the move, Horlander found out that her baby boy was very, very sick and, if he was born alive, would die shortly after birth.
She went online looking for support for birth defects and found BeNotAfraid.net, which offers support to couples and families who have had poor prenatal diagnoses and encourages them to carry their infants to term, or at least as long as possible.
Searching for guidance
With ever more sophisticated prenatal tests available, there are more and more people in Horlander’s situation. Many go in for a “routine” ultrasound looking forward to catching a glimpse of their babies and maybe finding out if the baby is a boy or a girl, and the room goes quiet as a technician or doctor notices that something doesn’t look right.
Others are notified after screening tests that the babies they are carrying have an elevated chance of neural tube defects such as spina bifida or chromosomal abnormalities such as Down syndrome, and are asked if they want a test such as amniocentesis to find out for sure.
Generally, when a poor diagnosis is confirmed, the parents are told they still have time to abort the baby, and it is often suggested that abortion would be the best course of action.
Catholic parents may look to the Church for information and pastoral care as they carry their babies to term, but such care is not always forthcoming, said Monica Rafie, the founder of Be Not Afraid (www.benotafraid.net), which offers online support and resources for people facing a poor prenatal diagnosis.
“What we don’t have is widespread parish response,” said Rafie, who participated in an Oct. 5 webinar on poor prenatal diagnoses hosted by the National Catholic Partnership on Disability (NCPD). “If you travel across the country, there are good programs in every state, but they are not everywhere. … This is not a new problem. Prenatal testing has been around for a long time. We’re behind on this.”
Innocent lives at risk
The absence of care or discussion has real consequences, said Rafie.
“Women who have prenatal diagnoses who might abort are in our pews,” she said.
Indeed, the American College of Obstetrics and Gynecology reports that 90 percent of its member obstetricians see abortion as justified when a fetus has fatal anomalies and 63 percent see it as justified when a fetus has anomalies that are not expected to be fatal, according to an article by Marie Hilliard, chair of the NCPD committee on ethics and public policy.
Dr. Brian Skotko, a pediatric geneticist at Children’s Hospital Boston, estimated that in 2009 more than 90 percent of mothers whose fetuses are diagnosed with Down syndrome choose to abort them.
Catholic teaching is clear: Abortion is wrong, and prenatal testing for the purpose of deciding whether to abort a child is also wrong. Prenatal testing that is in the child’s best interest — such as to determine the best course of care for the child — is permissible, according to Pope John Paul II’s 1995 encyclical Evangelium Vitae (“The Gospel of Life”).
But that’s not always the interest that medical personnel are considering, say advocates for mothers carrying babies that have prenatal diagnosis. Those families need to hear Catholic teaching explained with love as soon as possible.
“We know from experience that a priest, deacon or pastoral staff member is generally the first person sought out following such a diagnosis. But oftentimes clergy and staff feel ill-equipped to counsel these families and counter the technical and compelling language of the medical community,” Cardinal Daniel DiNardo, epsicopal moderator of the NCPD and chairman of the U.S. Conference of Catholic Bishops’ Committee on Pro-Life Activities, said in a statement.
Instead, according to Rafie, Catholic pastoral workers too often deflect the issue, suggesting that the diagnosis might be wrong or reminding parents that God can work miracles, leaving parents with nowhere to turn when the diagnosis is right and a miracle doesn’t happen.
Be Not Afraid offers a brochure giving advice on pastoral care, suggesting that ministers listen first, help parents reconnect with their baby, who is alive in the womb; encourage them to slow down; remind them that they are not alone; and encourage them to find hope.
A branch of Be Not Afraid in Charlotte, N.C., does that and more, providing hands-on support to mothers in its area and online support to those farther away. Tracy Winsor of Be Not Afraid-Charlotte reached out to the Horlanders as they prepared to deliver their son last summer. The family — with six biological and three adopted children ages 3-14 — knew that his brain had not developed properly, in addition to other problems.
Winsor made contact with the pastoral care director at the Horlanders’ new parish, St. Michael the Archangel in Cary, and helped find help for them.
She made the trip to be there when baby Andrew Benedict was born, and was able to share the Horlanders’ mingled joy and grief during his one hour and 25 minutes of life outside the womb.
During that time, he opened an eye once, and looked at both his parents, giving them a memory to treasure.
Winsor treasures the time she spent with the family, who are hoping to help a Be Not Afraid group get off the ground in the Diocese of Raleigh, where they live. Another group is trying to get started in the Diocese of Charleston, S.C.
Winsor’s group served one family in 2009, its first year, and has served nine so far this year, she said, and has received inquiries from as far away as the United Kingdom. While the idea is to offer hands-on service, the group does offer long-distance help if that’s the only option, she said.
Another group, Prenatal Partners for Life, also offers online help and even assistance with expenses such as burials, said Mary Kellett, its founder, who started the group after her son Peter was diagnosed in utero with Trisomy 18, a chromosomal abnormality that doctors told her was “incompatible with life.”
They advised her to abort him because “nobody carries these babies” and he wouldn’t live for more than two weeks, she said. He is now nearly 6 years old.
Prenatal Partners for Life offers parents a chance to share their stories and has resources such as a CD with songs that reflect their experience and a book for siblings, she said.
“What we do is take away their fear and replace it with love,” she said.
Michelle Martin writes from Illinois.
How to Help (sidebar)
The following are suggestions on how to help, from Amy Horlander, Tracy Winsor and Monica Rafie: