Fetal surgery is barely 30 years old, with the first in utero intervention taking place in 1981. While breakthroughs in stem cell and gene therapy might some day make fetal surgery obsolete, today it remains a cutting-edge, highly sophisticated surgical procedure reserved for the most complex birth defects.
The Children’s Hospital of Philadelphia is among the handful of medical facilities in the world that perform fetal surgeries. The hospital is also the setting for Twice Born: Stories from the Special Delivery Unit, a three-part documentary series premiering on PBS. The series primarily follows the experiences of four families at Children’s Hospital, including a couple from Raleigh. It airs on UNC-TV this Thursday, April 2, at 10 p.m. The second and third episodes will air April 7 and April 14 at 8 p.m.
Produced and directed by Emmy-winning filmmaker Monica Lange, Twice Born spans 14 months when Lange and her film crew were embedded at CHOP and captured both the medical professionals at the forefront of fetal surgery and families who participate in this physically and emotionally invasive procedure. After principal filming was completed, the editing and post-production process took place at Raleigh’s Trailblazer Studios.
The INDY spoke with Lange about the film, which she describes as having “the arc of a drama.” Two families are introduced in episode one and remain throughout the series, while the stories of two other families develop in the latter episodes.
INDY: Most of your past documentaries address child medical issues, including autism, conjoined twins and multiple births. Did that influence your interest in fetal surgery and research for Twice Born?
MONICA LANGE: My interest in fetal surgery has been there for a while. But fetal surgery needed to come to a point of maturity in order for it to be made into a series. In 2011, there was a huge [National Institutes of Health] study led by Dr. Scott Adzick of CHOP. That study was stopped short because the effectiveness of fetal surgery was considered to be so great that it was unethical to deprive the control group of its benefits. When that happened, the field had reached a point where it was something that was standard-of-care that could be made into a film series. Also, the patients coming through CHOP who actually get fetal surgery—which number about 150 per year—meant we could logistically do a series. The time was right, and I also wanted to be the first [filmmaker] to do it.
Was CHOP looking for someone to make a film about them and fetal surgery?
The hospital was not looking for someone and not standing there with open arms. It took powers of persuasion, both with PBS and the hospital itself. And I had to have my homework done, I had to let Dr. Adzick quiz me about what I knew about fetal surgery and their work and research. I had to show him I was serious. He asked me how long would the [film project] take. I told him four years and his eyes popped open. But I also know that made him realize we were really serious. They had been approached by other [filmmakers] both before and during our filming, and they turned them down.
Was the early skepticism over fetal surgery from a medical or ethical viewpoint?
I can’t really tell you any ethical concerns that might have been swirling around this [procedure] … We didn’t go deep historically into an overview of fetal surgery. The show deals with patients who go through the program and what happens to them … It’s the experiences of four families, two of whom are seen throughout the entire 3-hour show and two of whom are seen in individual 1-hour episodes. We also go quite far into discussing the doctors’ own lives and some of the parenting experiences they have, which in one particular case are quite surprising. A lot of this is about what being a parent really means in a profound way.
From the perspective of fetal surgery candidates, is there any information in the film about how people are chosen for the fetal surgery program?
That’s a huge topic of the film. There are a number of factors, some of them related to the potential benefit. First, will the baby benefit enough for the risk to be taken? Each syndrome has its own criteria, where you’re weighing physiologic benefits versus risk. The second consideration is whether the parents can logistically pull it off, because between the time of the fetal surgery and the time the baby is delivered [the mother] has to stay in Philadelphia. The reason is if something suddenly happens, [CHOP] are the ones who are going to deal with it. She also has to have someone with her 24 hours a day, seven days a week. So it’s an enormous commitment on the family’s part to do this for their child. And at the same time they don’t know if it’s going to turn out well. These families make a huge sacrifice to do this, and it’s not a slam dunk. The third criteria is psychological. You see in the film what happens with these moms and what they go through. It’s not for the faint of heart.
How many subjects did you follow and film versus the four families that ended up in the film?
All the families we followed and filmed are in the film. Four families were chosen and four families are in the film. The first mom we got was so powerful and such an amazing screen presence. Her story was remarkable. Same deal with the second mom. And then the other two families, which are the shorter stories, each has something very poignant about them.
How do you convince these people to open up their lives under such trying circumstances to appear in a film?
My feeling is that people who are in extremis want someone to bear witness to their story. You feel like nobody understands what you’re going through. So when you come to someone and say, ‘I’m going to tell your story, I’m going to tell the world and your family and friends what you’ve done for your child,’ people say yes. I tell them I’m going to be very honest about this and with them a lot. They do have the right to tell us we need to stop. And I very rarely in all my filmmaking experience have people say no after hearing that.
Tell me about Geneva and Reggie from Raleigh, one of the families featured in the film.
They had a baby with LUTO—Lower Urinary Tract Obstruction. They came to CHOP from Raleigh desperate because LUTO can be fatal. [The urinary tract] backs up and ultimately there’s no more amniotic fluid and the baby dies. At the time they came to CHOP they were at risk of losing their baby or could have chosen to get an abortion. CHOP has an intervention for babies with LUTO, and you’ll have to watch the series to see what happens to them.
