Anita Creamer: A gift to cherish

Faith Anne Van Steyn was born three weeks early, at 4:59 a.m. on Aug. 8. She lived for only 46 minutes. Yet every moment of her life -- every breath, almost -- was carefully documented. And every moment of her life, she was beloved.

"She was so sweet," says her mother, Jackie Van Steyn. "She was beautiful, and we loved her."

This is a story about love and loss and, most of all, choice -- the choice to carry a child to term even though doctors said she had no chance of surviving; and the choice to cherish her memory through pictures taken by a volunteer photographer.

In similar circumstances, it's perhaps the rare couple who would make the same decisions as Jackie and Mike Van Steyn of Laguna, married for three years and active in their nondenominational Christian church.

But compassion alone leads us to understand that they loved their baby long before Jackie even knew for sure she was pregnant.

And compassion as well lets us see how important it was for them to keep Faith with them after she was gone -- in a lock of her dark hair, in plaster casts of her tiny hands and feet and, most of all, in the powerful photographs taken by Tamara Scott, a nurse and part-time photographer.

"Coming home from the hospital empty-handed was one of the hardest moments of my life," says Jackie, 35. "There was such a feeling of emptiness, such a big void. But Tamara had just e-mailed me a few of the pictures, and there are no words to express the gift of that gesture.

"Faith really was here, and here was proof."

The nonprofit that Scott volunteers with, Now I Lay Me Down to Sleep, specializes in taking photos of stillborn babies and newborns not expected to live -- documenting their brief presence in the world as a way to help their families grieve.

As Faith's father, Mike Van Steyn, 43, says: "To have these pictures helps with grieving and loving and remembering the experience of having Faith's little life with us."

Jackie in particular likes to look through Faith's pink cloth-covered baby book, and she watches the video compilation Scott made of the baby photos again and again.

It's her way of letting go.

It was a matter of faith.

That's why the Van Steyns declined a routine amniocentesis test early in Jackie's pregnancy. They wanted children, and they weren't worried about raising a child with a birth defect.

"It just didn't matter to us," says Jackie.

This was the first pregnancy for the Van Steyns, a real estate branch manager and a computer technician who met through the singles' group at Elk Grove's Sun Grove Community Church. Jackie also has a 13-year-old son, Garrett Stone, from her first marriage.

They were thrilled to have a baby on the way. And Jackie was pleased at what she calls her fairy-tale pregnancy. No morning sickness, no problems.

In early May, she went in for an ultrasound test to measure the baby's development. And her dream pregnancy quickly went very, very wrong.

The Van Steyns learned they were having a daughter. And they learned their daughter wouldn't live.

"I didn't really believe the doctor's diagnosis at first," says Mike. "I heard it and understood it, but I didn't want to believe it."

In a blur of follow-up tests and consultations, they came to grips with the situation. Their daughter had trisomy 13, a chromosomal abnormality that can cause brain damage, facial malformations and more. If trisomy 13 babies make it to term, they're likely to die within the first few months of life.

Tests showed that the Van Steyns' baby had holoprosencephaly -- her brain hadn't divided into two cerebral hemispheres -- and she would never breathe well on her own, because she had a proboscis instead of a nose.

There was no hope at all for baby Faith.

Through the years, their pastor, Phil Oswald, has dealt with other congregants' abnormal pregnancies, and he's consulted with medical ethicists at Stanford's Lucile Packard Children's Hospital about how best to help.

"People want you to tell them what to do, because they're shell-shocked," he says. "But we walk people through this in a non-authoritative way, so they can come to the conclusion that fits their heart."

Jackie Van Steyn already knew what her heart told her.

"I knew that when God's ready to take my baby, he'll take her," she says. "But I wouldn't do it."

Initially, Mike wasn't as sure, he says, but her determination and acceptance convinced him.

At diagnosis, Jackie was already 22 weeks along. The baby's heartbeat was strong, and she was active and kicking. Doctors assured them that continuing the pregnancy posed no risk to Jackie -- and further, that with appropriate care, their baby wouldn't suffer after birth.

During a follow-up ultrasound procedure, they watched as their daughter opened her mouth and inserted her thumb. She was a baby, their child, and nothing else mattered.

The remaining weeks of pregnancy were hard. Jackie says she felt numb, even though she had the support and prayers of friends and family.

She coped by getting organized: connecting with other trisomy 13 families over the Internet; arranging for her baby's hospice care and comfort care; and contacting the Texas-based Carter Centers for Research in Holoprosencephaly to donate the baby's brain and tissue samples, in hopes that other families can benefit one day from their loss.

She also found Tamara Scott through the Now I Lay Me Down to Sleep Web site (www.nilmdts.org).

"In the photographs, people can see Faith for the beautiful child she was," Jackie says. "All babies are beautiful. She was made exactly like she was supposed to be made."

After 55 hours of labor, she delivered Faith on Aug. 8 at Sutter Memorial Hospital. She weighed 4 pounds, 9 ounces and was 18 inches long.

They clicked, first in e-mails, later when Tamara Scott met the Van Steyns to take photographs of the family while Jackie was still pregnant.

Scott, 44, is a pediatric oncology nurse practitioner with a portrait photography business on the side. Her little girl, Olivia, is 4 now, but she says she struggled with infertility for years.

That's what drew her to Now I Lay Me Down to Sleep.

"I know that sense of losing the dream," says Scott. "And there's still such a stigma about losing a baby. Nobody talks about it. There's a relationship that's lost, and nobody acknowledges it."

Established in Colorado only a year ago, Now I Lay Me Down to Sleep now maintains a roster of more than 800 volunteer photographers nationwide, says cofounder Cheryl Haggard.

Clearly, the concept has touched a nerve.

Even so, Haggard says: "It's not for everybody. Either families want this, or they don't."

The Van Steyns did. They wanted to do everything they could to honor their daughter's life, no matter how short it was.

And so Tamara Scott was there with them in the hospital. It was her first Now I Lay Me Down to Sleep assignment, and some of the photos are hard for her to look at now.

"But when I was there in the room with them, all I saw was how beautiful the baby was," she says. "All I saw was their love for her."

Jackie and Mike held their baby, wrapped in a soft blanket. Phil Oswald blessed the baby, and Mike washed her. Faith never opened her eyes and barely moved. But when Jackie nuzzled her and kissed her cheek, the baby always responded.

"It's like she knew it was her mother," Scott says. "I think she recognized her parents' voices. She knew she was loved."

After 46 minutes, Faith's heart stopped beating. The Van Steyns dressed her in a frilly pink-flowered dress and bonnet and encouraged Scott to continue taking photos as long as she could.

"To be there for this child's whole life is incredible," says Scott. "To share that with the family is very intimate. You could feel the love they had for her."

Mike Van Steyn says he can look at the photos and see the love, fear, powerlessness and joy of those moments.

More than that, he says: "To have these pictures and the video gives it more longevity. That morning went by so fast."

Despite their bereavement, the Van Steyns know they're blessed: They learned that Faith's trisomy 13 wasn't genetic, and they want to have other children one day. But Faith was their firstborn, their beloved, a child of God.

"I'm not preaching to anyone," Jackie says. "Each decision is each person's to make. Neither outcome was desirable to us, but this is the one I felt good about."

To the Van Steyns, Faith's short life had purpose and meaning. She touched them, and they know she touched other people. And she'll be with them forever -- in their hearts and in the photographs.

About the writer:

• Anita Creamer's column appears Wednesdays, Fridays and Sundays in Scene. Reach her at (916) 321-1136 or acreamer@sacbee.com. Back columns: www.sacbee.com/creamer.