When a Child Dies

“Choosing Thomas” — The Dallas Morning News

“Just be yourself and forget that I'm here.”

That's what Sonya Hebert told Deidrea and T.K. Laux when starting to chronicle their choice to bring a son into the world knowing, even if he made it through birth, that he would quickly die from a fatal genetic condition. The result is an online video that follows the couple through Deidrea's last four months of pregnancy and the five days Thomas Laux had to live after he was born.

Choosing Thomas,” which won a 2010 Casey Medal for Meritorious Journalism, has been likened to a family movie. What's remarkable — beyond the family's love for their boy and their resolve to make his short life as meaningful as possible — was the intimacy with which it's documented. The video is a full collaboration between a journalist and her subjects, a thoughtfully rendered chronicle of the kind of moments that are so private, most journalists don't get nearly close enough to witness.

The project began as part of a Dallas Morning News series on hospice care by reporter Lee Hancock and Hebert. Baylor University Hospital suggested that the duo meet the Lauxs who, five months into Deidrea's pregnancy, had learned that their son had Trisomy 13, a genetic disorder that's usually fatal shortly after birth.

Hebert was relatively new to her craft, having snagged an internship at the Morning News two years earlier after completing a graduate degree in visual communications. The internship led to a full-time photographer position, which she had only briefly before launching the project.

She first met with the couple without a camera or notebook, discussing ground rules at their kitchen table. They told her what they wanted from the project.

“We asked for one thing: That she take the whole picture in all its completeness, and that she be there from start to finish,” Deidrea says. She and T.K. felt that chronicling Thomas' story would help people learn from his short life, thereby giving it meaning.

Hebert agreed.

Boundaries immediately were a challenge, especially given her inexperience. For months, she declined the Laux's invitations for dinners or social occasions, always mindful not to cross what she perceived to be professional lines. Partly, she says, she needed space to stay aware of what she needed to include about Thomas's story and what she didn't. And partly, she adds, she was overwhelmed by the intensity of the project and the tug to mourn with the couple, to hug and console them.

Hebert tried to be as invisible and unobtrusive as possible during the months she shot still photographs and videos of the family. She tagged along the day Deidrea posed for pregnancy pictures with the photographer who shot the couple's wedding. She accompanied the Lauxs to the mortuary to pick out a coffin for the child they'd never met. She was there for ultrasounds, a shopping trip for Thomas' funeral clothes and moments on the couple's bed when T.K. would speak to his boy through Deidrea's belly.

Deidrea didn't let her mother into the delivery room, but had no hesitations about giving Hebert whatever access she needed. With her still and video equipment, Hebert shot the entire labor and delivery, capturing the anxiety of first-time parents who were hoping merely for the chance to hear their son cry.

She slept in the couple's guest room each of the five days after Thomas' birth. Even though it was tough putting down her cameras, she couldn't resist holding and rocking him. “I fell in love with him,” Hebert says. “Everybody did.”

“Just be yourself and forget that I'm here.”

The day leading up to Thomas's death, Deidrea handed him to Sonya so she could go to the bathroom. It's a testament to their intimacy, Deidrea says, that she could joke, “Don't let him die while I'm gone.”

In photographing Thomas, Hebert struggled with the challenge of making a terminally ill newborn with a hairlip and one closed eye seem fully human. She did so with close-ups of Thomas's soft skin and tiny fingers and with light video moments like when he sneezed into his dad's face.

“This was a story that had all the joys of life and all the sorrow, wrapped up in a short period of time, in a five-day life. That was my challenge — to show the reader and online viewer all sides of it,” Hebert says. “That's why I was able to be there at the end, because I was there at the beginning.”

Hebert's final challenge was how to how to condense five months of still and video photography into a 9.5-minute online video that viewers would watch all the way through.

“Everything had to contribute to the story of baby Thomas and his journey,” she says. “They do go through so much heartache, but there's peace in the end.”

To the surprise of Hebert and the Lauxs, the video went viral among religious groups, especially those opposing abortion.

“We know why we did it,” Deidrea says of their participation in the project. “I think you just don't have control over what happens to your story.”

Added Hebert: “That's part of journalism today in terms of the web presence. Where things go, how people react to the work you do is really up to them.”

Eventually, the boundaries between the photographer and her subjects faded. Hebert was present for the birth in 2010 of the couple's second child, Isabella, who calls her auntie.

“Truthfully, sometimes I ask myself 'really, did I really put my legs in stirrups in front of a photojournalist?',” Deidrea says. “But having Sonya there was actually was a big comfort. Answering her questions was cathartic for me. It gave me a release, a place to put a lot of things I was feeling.”

The video has been screened at conferences for doctors, nurses, hospice specialists and ethicists. Physicians recommend it to parents of babies with Trisomy 13 as what Deidrea calls “a glimpse of what their lives will be like when their babies are born.” It's also widely viewed by other families who have lost children.

“It's almost a taboo subject to talk about dead babies. It's a sick, stupid club — the parents of dead babies club. But here were all are wanting so much to connect with each other and share our experiences,” she says.

Hebert credits the Lauxs for making a leap of faith and for affording her the privilege of shooting as long as she needed. If she were in their situation, she's pretty sure she wouldn't have opened the experience to a journalist.

“To be honest, I can't imagine allowing someone in that close at a time when I was experiencing something so painful,” she says. “Deidrea and TK taught me so much. I don't know I could be as strong as they were.”