Be Not Afraid

1987 graduate offers support, hope for parents facing negative prenatal diagnoses

By Rita Buettner

Flickr Creative Commons / lucayepa

Flickr Creative Commons / lucayepa

It was just an ultrasound.

Tim and Sandy O’Connor Buck, ’87, were expecting their third child, and they had been sitting in the waiting room for hours. Finally she encouraged him to go back to work.

“It’s no big deal. We’ve had ultrasounds,” she told him. They weren’t concerned. “Who goes to an ultrasound thinking you’re going to find something wrong? You go to get a picture for the refrigerator.”

So Buck was alone with their daughters when she saw the technician turn the screen so she couldn’t see. Then the technician left the room without saying anything. When the technician returned with the doctor, her two daughters—tired, hungry, and bored after waiting for so long—were climbing all over her.

“The doctors told me there’s a hole in the heart,” Buck said. “And I thought, a hole in the heart, I’ve heard of that, you can fix that.”

But the doctors weren’t finished. They started using other terms, offering guesses at the baby’s diagnosis.

“They talk at you like you’re an idiot,” said Buck. “Then you’re ushered into the genetic counselor’s office where they give you all the bad news and use terms like ‘incompatible with life.’ We were offered an amniocentesis to confirm the diagnosis and went back the next day and had it done.”

That’s when the doctor confirmed that their child—their son Casey—had Trisomy 18, a chromosomal condition with potentially life-threatening medical complications. The genetic counselor gave them statistics about potential outcomes, all of which meant that their son was unlikely to survive long after birth.

The genetic counselor offered one option. She could schedule an induction. Buck and her husband declined.

“That was when she said, ‘You’re on your own,’” Buck said. “There’s no support. There’s nothing available. The doctors don’t really have the time or the resources to do all the things that it takes to support parents in this situation,” she said.

Unsure what to do, the Bucks told their family and close friends, but no one else until after Casey was born still at 32 weeks.

It was only then, as they shared the story of Casey’s life with others, that they started hearing from people who had had similar experiences. Buck realized she could help fill a void, meeting the need for support for parents facing negative prenatal diagnoses.

So Buck and her friend, Tracy Winsor, partnered with Monica Rafie who had created the first online outreach for parents, a website called BeNotAfraid.net. They developed a model of care for parents that combines elements of perinatal hospice and pastoral care, informed by the ethical teachings of the Catholic church, and began journeying with families through their experiences of prenatal diagnosis and infant loss. (A similar organization, Isaiah’s Promise, is based in Silver Spring, Md.)

Photo by Faith Massey (Images by Faith) www.imagesbyfaith.com

“Part of what we do is help families share,” said Buck, who was an accounting major at Loyola and lives in Huntersville, N.C., where she works as a volunteer coordinator for Catholic Charities in the Diocese of Charlotte. “You’re going to do all the parenting while you’re pregnant. You’re more attuned to the kicks. You’re paying more attention because this is potentially going to be it.”

Parents who reach out to them are as uncertain as Buck was when she was expecting Casey. But they find in Be Not Afraid a support system and advice on how to prepare for their child.

“For a mother who’s experiencing something as devastating as being told your baby is going to die, there are plenty of people who can be empathetic, but it’s different to talk with someone who has actually done it,” Buck said. “It’s devastating to lose a child, and it’s really hard to think you’ll ever be happy again, but if you can look at someone who has come through it, it gives you hope for the future.”

When parents come to Be Not Afraid, some of the babies have fatal diagnoses, and others will be born alive, but not likely live long after birth.

“One thing that we have seen over and over is that at the births, even when the baby dies, they are joyful. The families are prepared and they’ve done a lot of honoring of the life beforehand,” Buck said. “It’s a sad event, but because they’re prepared, it’s not devastating.”

Flickr Creative Commons / Quinn Dombrowski

Flickr Creative Commons / Quinn Dombrowski

Before the baby is born, Buck and Winsor and a team of trained peer ministers and volunteers work with the family to prepare a birth plan, introducing the child to the medical team before the birth. They discuss hypothetical scenarios so the family is prepared for every possibility. At the birth, Buck and Winsor are there, waiting with the family through the delivery. They take pictures, save some of the baby’s hair, get handprints and footprints of the baby after birth. Over and over again, they tell the parents how beautiful their babies are.

“We’ve had nurses in the hospital say, ‘I’ve never seen anything like this,’” Buck said. “There is joy.”

Even 11 years after losing Casey, Buck’s grief is very real. She went through bereavement training through the Diocese of Charlotte before she began working with Be Not Afraid.

“Especially with miscarriage…parents are not really given the opportunity to grieve because no one else knew that child,” she said. “There’s more of a tendency for people to say you should get over it. You tend to push it away. And just get over it. Once I went to bereavement training, I realized I hadn’t  gotten over it. That training combined with my own experience enables me to assist others in the hard work of grieving.”

And a parent can never get over the loss of a child. “It gets easier as time goes on, but it’s still there,” Buck said.

All of the parents served through Be Not Afraid say they have no regrets about deciding to carry their child to term. Afterward, most of the mothers want to volunteer to help other families—though Be Not Afraid makes them wait until they are ready.

Two of the babies of the families they have worked with have surprised doctors and lived longer than expected. One is 2 and another is 2 ½.

One of those, a baby girl, was born with anencephaly, a brain condition that is typically fatal. “The nurses weren’t taking care of her. After a few hours, we thought, she’s still pink. She’s still fine,” Buck said. “This little baby was still alive and she was hungry. The mother got the baby nursing, but the hospital wasn’t tending to her because she wasn’t supposed to survive. So we called in hospice.”

But the baby survived. “She has special needs, but she’s the absolute joy of her family. Ever since then we plan for every outcome—and we don’t pray for miracles.” Instead, she said, they assert the dignity of the baby, born just as God created him or her.

Being at the hospital for 12 or 13 hours, waiting for a child to be born, and then celebrating the birth, is so rewarding for Buck—who has no photos of her own son Casey. The Bucks’ older daughters, Colleen, 18, and Kathleen, 15, remember being in the hospital and seeing or holding their brother. But the details fade over time. And Michael, 7, was born after Casey. Every year the family celebrates Casey’s birthday.

The Buck family, Easter 2012 (courtesy of Sandy Buck)

And Buck continues her work, which is rewarding, even as it brings back memories of the little time she had with Casey.

“We’re not out to change the world,” she said. “We are pro-life, but we are not out to convince everyone with a diagnosis to carry a child to term. But if you do, we can help you.”

Learn more about Be Not Afraid here.

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