PBS documentary ‘Twice Born’ shows prenatal surgery drama

RALEIGH - On a wall of her office at Trailblazer Studios, Bonnie Cutler-Shear has a medium-sized bulletin board covered in rows of pink, yellow and green sticky notes. Each note has cryptic scribbles – “Meeting with Julie,” “Time passes,” “Shelly MRI” – each representing what would become a scene in the new three-part PBS documentary “Twice Born: Stories From the Special Delivery Unit,” debuting this week.

“Yep, here is the show, basically,” said Cutler-Shear, the project’s co-producer/editor. “We had to take 200 hours of footage down to three one-hour shows, and this was how we talked about story and how to structure each one. I feel like I can’t take this down, ever. It’s like our little shrine.”

Most of the events shown in “Twice Born” happened 400 miles north, at Children’s Hospital of Philadelphia. As shot by producer/director Monica Lange, the project followed four families from across the country as they grappled with medical crises over a 14-month period.

But the post-production editing and shaping of “Twice Born” happened at Trailblazer, a studio facility tucked away in a business park just outside the Interstate 440 Beltline in North Raleigh.

“Twice Born” depicts a medical advance that once seemed like science fiction: prenatal surgery, in which doctors operate on unborn babies before birth.

UNC was among the earliest hospitals to perform this surgery as far back as 2000. That same year, Vanderbilt University surgeons repaired the spina bifida of Anna Williamson of Holly Springs in utero, a story chronicled in The News & Observer; Anna is now 14 years old and walking well enough to play basketball. But Children’s Hospital of Philadelphia has America’s largest fetal surgery program, which offered filmmakers the volume of cases needed for a documentary.

The four families “Twice Born” follows were expecting babies diagnosed with a wide range of disorders including spina bifida, a spinal defect that can cause paralysis, cognitive issues and other problems; a mouth tumor so large it threatened suffocation; and twin-to-twin transfusion syndrome, in which one fetus is starving the other. Fixing problems like these in utero involves the highest of high-risk surgeries, and not all of the outcomes in “Twice Born” are good.

“It’s not always a happy ending,” Cutler-Shear said. “Right upfront, the doctors always say there are no guarantees with this. One doctor told us that he carries the heartbreak of every single case with him. But by and large, they are doing incredible things for these children.”

Devastating ultrasound

One of the four “Twice Born” families, Reggie and Geneva Yourse, lives in Cary. Their odyssey began with an ultrasound at 14 weeks showing their unborn son had developed an enlarged bladder and kidneys, plus irregularities in the amount of amniotic fluid. That had implications for lung development, with potentially devastating consequences.

“Our doctor explained it this way,” Geneva Yourse said. “‘This is too early to deliver a viable child, so your options are to terminate the pregnancy; wait for him to pass away naturally in utero; or give birth and he’ll pass away then because he’ll have no lung function.’ I was very upset, to say the least.”

The Yourses hit the Internet and found Children’s Hospital of Philadelphia, a pioneer in fetal surgery. No one wants to say too much about what happened for fear of revealing spoilers. Perhaps it’s not revealing too much to say that their case wound up being less dramatic than some of the others in the film.

But it was still an emotional as well as medical ordeal. And while you might think the presence of camera crews would make it harder to endure, the opposite was actually true.

“It made you feel like you weren’t by yourself,” Yourse said. “The crew was really nice, and it was comforting to be able to talk through all of this with them. It didn’t feel like they were intruding, they were just my new friends who wanted to talk about all this craziness going on.”

As time went on, the Yourses would also hear from the crew about other “Twice Born” families they’d met, and how they fared. Sometimes, the news was not uplifting.

“It was really sad to hear how some of them turned out,” Yourse said. “Heartbreaking, really. Prior to this, we lost two kids ourselves from miscarriages, and it was just an unbearable thing.”

A lot of this heartbreak is there on the screen to see, because the Yourses weren’t the only family to take comfort from being able to talk things out in “Twice Born.”

“People want to tell their stories, for others to bear witness when they’re going through something,” Lange said. “Everyone was happy to cooperate because they felt like nobody understood what they were going through. And the doctors were the same way. One of them said, ‘My family is finally going to understand what I do.’ We were bearing witness, and they were happy to have us do that.”

One situation, however, turned out to be a little more touch and go.

“One family went through something very traumatic, and we happened to be there when it happened,” Lange said. “We agreed to give them time to think over whether or not they’d still participate. ... In the end, they did agree to be interviewed and have their story included.”

Dramatic documentary

The makers of “Twice Born” have known each other for 30 years, since Lange hired Cutler-Shear for her first job out of college at a small production company in New Jersey. Eventually Cutler-Shear wound up in Raleigh at Trailblazer, which opened in the mid-1990s. Lange still lives in New Jersey, but she’s also on-staff at Trailblazer.

The two found themselves working together again on some health-oriented projects for the Discovery Channel a few years back, and they clicked enough to form a partnership. When Lange found out about Children’s Hospital of Philadelphia’s prenatal surgery program, it seemed like the perfect subject for a dramatic documentary.

“It’s already pretty darned inherently dramatic, so it’s not like we had to resort to any tricks,” Cutler-Shear said. “We wanted it to be real, without hype, and we had incredible characters straight out of central casting – doctors and patients both. The other thing is we didn’t want a ‘Voice of God’-type narrator. We wanted everyone just telling their stories, so there’s no narration.”

Risks of surgery

It’s worth noting that some scenes in “Twice Born” will test the squeamish. The gore is not gratuitous, but still – surgery is surgery and you can’t do a show like this without showing at least some of it.

One of the major stories in “Twice Born” involves spina bifida, which appears deceptively simple to treat – open up the uterus, make a small incision in the back of the fetus, stitch it up and put everything back. But it’s tricky because a major risk of prenatal surgery is triggering premature labor.

That left the expectant mother on total bed-rest for four months after the surgery, leading to what the “Twice Born” crew jokingly came to call “The Siege.” Lange was stuck in Philadelphia for 19 days waiting for labor to start.

“The thing about doing a show like this is you’re beholden to what really goes on in people’s lives,” Lange said. “You have no control over the medical situations, so you’re captive to what happens. But being willing to wait and be there for when things happen is how you get the best stuff.

“This was probably my most difficult project emotionally,” Lange added. “It was long, 14 months, and we had to be there all the time. But it was also by far the most rewarding. To follow people’s stories over a long period of time, see a baby being born and then come back a year later, was a dream come true.”

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