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Couples facing prenatal diagnoses find support and consolation from local Catholic services

by Marybeth T. Hagan

“There’s suffering and there’s joy. We had a taste of both.” With these words, Michael Henthorn of All Saints Council 14475 in Lake Wylie, S.C., recounts the experience of losing his daughter, Lily-Ann Rose, before she was born.

Just 13 weeks into the pregnancy, Michael and his wife, Andrea, received a devastating prenatal diagnosis: Lily-Ann had Trisomy 18, a genetic disorder that creates life-threatening medical and developmental problems.

Each time specialists at the local maternal-fetal medical center discussed the prognosis, they offered only one solution: “We can terminate.” Michael recalled how one doctor even referred to his daughter as “the throwaway baby.”

Still, such callousness was offset by kindnesses. The Henthorns received help and encouragement from Michael’s K of C council and others. The family was also referred to Be Not Afraid (BNA), a Catholic service that offers support to parents following difficult prenatal diagnoses.

In addition to providing a local service in the Diocese of Charlotte for couples like the Henthorns, BNA has earned a growing positive reputation in Catholic communities nationwide. In 2012, the Supreme Council donated $50,000 to BNA in support of their efforts in this often-overlooked, yet increasingly urgent, dimension of the pro-life movement.

Michael Henthorn of All Saints Council 14475 in Lake Wylie, S.C., and his wife, Andrea, are pictured on the steps of All Saints Church with their three children. Their fourth child, Lily-Ann Rose, died from prenatal complications. (Photo by Faith Massey)
“There’s suffering and there’s joy. We had a taste of both.” With these words, Michael Henthorn of All Saints Council 14475 in Lake Wylie, S.C., recounts the experience of losing his daughter, Lily-Ann Rose, before she was born.

Just 13 weeks into the pregnancy, Michael and his wife, Andrea, received a devastating prenatal diagnosis: Lily-Ann had Trisomy 18, a genetic disorder that creates life-threatening medical and developmental problems.

Each time specialists at the local maternal-fetal medical center discussed the prognosis, they offered only one solution: “We can terminate.” Michael recalled how one doctor even referred to his daughter as “the throwaway baby.”

Still, such callousness was offset by kindnesses. The Henthorns received help and encouragement from Michael’s K of C council and others. The family was also referred to Be Not Afraid (BNA), a Catholic service that offers support to parents following difficult prenatal diagnoses.

In addition to providing a local service in the Diocese of Charlotte for couples like the Henthorns, BNA has earned a growing positive reputation in Catholic communities nationwide. In 2012, the Supreme Council donated $50,000 to BNA in support of their efforts in this often-overlooked, yet increasingly urgent, dimension of the pro-life movement.

THE VALUE OF SUPPORT

Sandy Buck and Tracy Winsor developed BNA in 2008 after encountering parents in a parish-based perinatal bereavement ministry.

“Sometimes they would come to us after aborting, sometimes after the birth of a baby, but not having told anyone about the diagnosis,” said Buck.

Eighty percent of parents end pregnancies complicated by a serious prenatal diagnosis, Winsor noted. But that percentage is significantly lower when parents are offered comprehensive support, she added, since most parents experiencing a prenatal diagnosis want a better option than abortion.

When no one in the medical community in Charlotte was willing to establish a service providing support to parents carrying to term, Buck and Winsor found a medical counseling model that fit their needs and made the necessary adjustments to accommodate Catholic teaching. BNA was featured in a national webinar hosted by the National Catholic Partnership on Disability in 2010 and was incorporated as a private nonprofit two years later. To date, BNA has supported service development and/or provided workshops for dioceses in 10 different states.

Monica Rafie, who serves as chair of the BNA board, explained that the Supreme Council’s donation contributed to these national outreach initiatives: “The donation allowed us to focus nationally on supporting other Catholic communities developing services, as well as serving parents outside the Charlotte Diocese. We greatly appreciate the opportunity to work with the Knights in support of life.”

The Henthorns know the significance BNA and the Knights’ support firsthand. When Lily-Ann’s heart stopped beating at 15 weeks, Andrea’s doctor would not honor her wishes to deliver Lily-Ann by way of a hospital induction so that Andrea could meet and hold her precious daughter.

“I wanted to see her. I wanted to count her fingers and toes and see how wonderfully made she was,” said Andrea.

BNA peers, however, were able to suggest another physician, and three of them spent hours with Andrea during the induction in April 2012.

“BNA support was incalculable in our healing process,” Michael added.

In the weeks that followed, Michael’s K of C council arranged for three Masses to be said for Lily-Ann and presented the family with three K of C teddy bears that bring Andrea comfort to this day.

“When you feel like no one could possibly understand what you are going through,” explained Andrea, “the presence of others who care deeply makes you realize how truly good God is.”

THE LILIES OF THE FIELD

The Archdiocese of Philadelphia has long recognized the need to offer comprehensive support for parents who receive difficult pregnancy diagnoses, said Immaculate Heart of Mary Sister Kathleen Schipani, director of the archdiocese’s Office for Persons with Disabilities and the Deaf Apostolate. Each year, more than 100,000 couples find themselves in this heart-wrenching situation.

“We feel like we’re on the right track thanks to BNA,” Sister Schipani said of the archdiocese’s newly instituted Lily’s Gift ministry for parents carrying to term following a poor prenatal diagnosis.

Sister Schipani applied BNA’s model of care and service to the development and launch of Lily’s Gift in November 2013. “BNA’s trainers have extensive experience, and they are engaging presenters,” she said.

With BNA’s help, Lily’s Gift now has 16 trained peers and 10 trained auxiliary volunteers to assist parents in the Philadelphia area. Each peer either carried her baby to term after a prenatal diagnosis or lost her child via miscarriage, stillbirth or newborn death. This personal experience aids their work as companions and consolers.

“I’m in awe of the generosity of the peers. It’s a remarkable, sacred experience when people share from their own grief and are able to help others,” Sister Schipani said.

Kate and Gaetano Chetta of Audubon, Pa., turned to Sister Schipani for such support after seeing a notice about the group, which did not yet have a name, in their church bulletin.

“We wanted to make the most ethical and moral decisions for Liliana,” Kate said, referring to the daughter she carried for 26 weeks.

During an early pregnancy screening, the Chettas learned that Liliana was at high risk for Down syndrome. After an ultrasound at 20 weeks, Kate went to Children’s Hospital of Philadelphia for further testing. Liliana was diagnosed with congenital CMV, an infection that causes premature birth and permanent health problems or disabilities. Doctors recommended terminating the pregnancy. “They actually used the word ‘interrupt,’” Kate said. “We were left numb and in shock. We knew we weren’t going to do that.”

Liliana came into the world stillborn on April 25, 2013.

“Sister Kathleen came and sat with me when I was induced in the hospital,” Kate said. “She was invaluable.”

Kate’s input, in turn, inspired naming the group Lily’s Gift after Liliana. Sister Schipani said she was led to include Liliana’s name after Kate offered the scriptural passage: “Consider the lilies of the field, how they grow; they neither toil nor spin; yet I tell you, even Solomon in all his glory was not clothed like one of these” (Mt 6:28-29).

A BLESSING FOR FAMILIES

Though it is only three months old, Lily’s Gift is already proving to be a wonderful resource for parents, including Bea and Al Martin of St. Charles, Mo.

In the case of their son, Xavier, ultrasound tests were “huge blessings,” Bea said. These tests indicated that their baby had complex congenital heart defects that had to be addressed and provided the family with time to plan ahead. The Martins identified the Children’s Hospital of Philadelphia as the best location for Xavier’s birth and cardiac care.

“Without surgery upon birth,” Bea added, “our baby would have died.”

Bea was already receiving BNA support when her peer explained that BNA was supporting service development in Philadelphia. As delivery approached, the Martins connected with Sister Schipani and a Philadelphia peer, both of whom were available to support the family in their adopted city.

Together, BNA and Lily’s Gift provided prenatal support in the weeks before Xavier’s birth and in the months since. Sister Schipani showed the family around the city and arranged for a late-night baptism and confirmation on the evening Xavier was born. The surgery, in turn, was a complete success.

“Xavier is truly a miracle,” said his mother.

Though not every story has a happy ending, the assistance of groups like Be Not Afraid and Lily’s Gift remains a blessing for families who experience loss as well as joy. Kate Chetta, for one, is happy that her Liliana lives on in the good works of Lily’s Gift.

“There is hope, goodness and purpose amid the grief and loss,” she said.

The Henthorns, too, recognize that God’s hand was present throughout their experience of losing Lily-Ann Rose.

“It was tough on my wife. It was tough on me,” said Michael. “But we received so many graces. It brought us closer together.”

The loss of her daughter has led Andrea to be more active in pro-life activities, including praying outside a local abortion facility, participating in the parish pro-life group, and recently completing online training as a BNA peer.

“Our family was forever changed by Lily-Ann,” she said. “It is amazing that a person that little can have such an impact.”

Tracy Winsor, co-founder of Be Not Afraid, contributed to this article.

MARYBETH T. HAGAN writes from Rose Valley, Pa. She is the author of Abortion: A Mother’s Plea for Maternity and the Unborn (Liguori/Triumph, 2005).

Catholic Resources for Prenatal Diagnosis

Parents facing a difficult prenatal diagnosis can find comprehensive support based on the Be Not Afraid model in the following Catholic dioceses: Washington, New York, Philadelphia, Omaha, Charlotte, Providence, Allentown and Raleigh. For more information, click here: http://www.benotafraid.net/Resources/KnightsofColumbus.aspx