PBS Documentary 'Twice Born' Follows Families Through Fetal Surgery

Mar 31, 2015

Dr. Alan Flake with Lilly, moments after birth via EXIT procedure at The Children’s Hospital of Philadelphia’s Special Delivery Unit.
Credit PSB

A three-part documentary series premieres Tuesday on PBS explores groundbreaking fetal surgery being done at the Children’s Hospital of Philadelphia.

Twice Born: Stories From the Special Delivery Unit” follows four families as they go through in utero surgery to save the lives of their children.

The second and third installments air April 7 and April 14.

The hospital is the world leader in fetal surgery, and only 150 families qualify each year for procedures to save the lives of their unborn children.

For NHPR Morning Edition producer Michael Brindley, this upcoming documentary has a personnel connection. His wife Kate underwent fetal surgery in Philadelphia in September after being diagnosed with TRAP Sequence.

Michael spoke with Monica Lange, producer and director of Twice Born, to talk about the idea for the documentary and what it was like going into a project where the outcome for the families was so uncertain.

Was there something about fetal surgery that fascinated you as a filmmaker?

Well, the idea of operating on babies in the womb is a fascinating idea. It’s just an incredible human feat to be able to do that. So the idea of being able to do a film about that was obviously intriguing. And I had a feeling that people who were doing it would be interesting characters, and in fact they were.

The idea of operating on babies in the womb is a fascinating idea. It's just an incredible human feat to be able to do that. So the idea of being able to do a film about that was obviously intriguing.

What was your pitch to the hospital?

My pitch to the hospital is I think the time is right. You are the world leaders in this. You should be the first ones out there with a television series and I’m the one to do it.

Were there were any ground rules had to set with the families?

Dr. Julie Moldenhauer, left, talks with Shelly and Bobby about the possible option of fetal surgery for their baby with Spina Bifida at The Children’s Hospital of Philadelphia’s Special Delivery Unit.
Credit PBS

They had to sign HIPPA releases, but they were given the right to tell us to stop filming at any point and I think that gave us some security about doing this. They knew if they got very uncomfortable in a very difficult situation, they could ask us to leave the room. We agreed to that, but it never happened, but it gave people a sense of comfort with our being there.

Can you explain the types of conditions the families in your documentary are dealing with?

There are four conditions that we deal with. One is Spina Bifida, for which there is a very interesting intervention now prenatally. One is teratoma, which is a huge, outsized tumor that can develop in several places on a baby. One is Twin-Twin Transfusion Syndrome, where twins are endangered because they share the placenta and they have unequal distribution of the mother’s blood between them. And the other one is called LUTO (Lower Urinary Tract Obstruction), where a baby can no longer pee inside the womb. This is basically a fatal condition in many cases if left untreated.

Take me through the daily routine of the filming process.

You don’t go film every single day for 14 months. We filmed a total of 46 days, so my job was to figure out which 46 days to film. I was constantly in touch with the patients and the medical people to ask what was happening today, what was happening tomorrow. Is this a big milestone for this family? Is this a story beat we should cover? That was the daily routine, figuring that out.

Some days, we’d pull the trigger and we’d go. Other days, we’d sit in Philadelphia and wait for things to happen or wait for babies to be born. At one point, we sat in a hotel next to the hospital for 19 days without shooting. Because once this mother went into labor, they were going to be deliver the baby instantaneously, via cesarean. We couldn’t go anywhere. So some of what you do when you’re doing this type of film is wait. And there are some long waits.

What about the doctors and hospital staff? How much focus is on them?

We focus on the doctors quite a lot and we get to know them as characters and we demystify them. Sometimes doctors are considered to be X-Men or they have this sometimes heroic posture or sometimes a demonic posture. They’re often not portrayed as just human beings. I wanted to do that. I wanted to tell their stories and we were able to do it.

Lesly seeing her baby Lilly for the first time in the neo-natal intensive care unit at The Children’s Hospital of Philadelphia
Credit PBS

Obviously, this type of project involves a lot of unknowns. You don’t know how it’s going to turn out for the families. Was that a challenge at all for you?

That was a huge challenge. When you sign up with a family, you don’t know where it’s going to go. This truly is verite filmmaking, documentary filmmaking. You have to trust that things are going to unfold in a way that makes it an interesting story, that you’re going to be able to do your storytelling thing. You never really know that in beginning. What you do know is whether this is a good character or not, or good set of characters in the case of a couple. Do I feel that I can make an interesting story out of their experience?

Do you have to just let yourself become emotionally invested or do you try to maintain that distance?

I become emotionally invested, for sure. I do. You have to do your job, and when things are bad, when things are sad, and even when things are happy, you can’t lose it as a filmmaker. But I do feel it. I feel it a lot because over the course of this amount of time you become close to these families. Their pain is your pain. Their joys are your joys.

What do you hope people take away from watching this?

Animation of a sonogram of a 21 week fetus.
Credit PBS

First of all, you want to tell a good story. You hope that people are engaged, touched and informed. Secondly, you want to tell people about a unique human experience. Having your baby have a birth defect and having that birth defect dealt with in the womb is an incredible experience. I want people to know there are human beings going through this.

Having your baby have a birth defect and having that birth defect dealt with in the womb is an incredible experience. I want people to know there are human beings going through this.

   Raising awareness is part of it, but good storytelling is one part, and a very important part.

What’s something you learned or take away from this experience?

What I took away from this experience – both from the doctor’s side and from the patient’s side – is that parenthood trumps everything. Parenthood is the most profound human experience. It’s the most profound experience of love. And even love for your not-yet-born child is an intense thing and the film really explores that.