Four years ago, filmmaker Tomasz Śliwiński and his wife, Magda Hueckel, welcomed a baby boy, Leo, into their lives. The moment of joy quickly turned to pain and despair when they were told that Leo was born with a respiratory disease: congenital central hypoventilation syndrome, commonly known as Ondine’s Curse. Over the next six months, Tomasz and Magda decided to film themselves, initially as a coping mechanism and a means to channel their angst into something creative.
From the outset, Śliwiński’s intent was to make the film only for his family, to document this particularly trying experience of parenting. But when he started the editing process, he realized that he had something valuable to share with the rest of the world.
We spoke with Śliwiński by email about parenting, filmmaking and Leo.
You address a painful and personal subject—raising a newborn child who has a rare and possibly fatal disorder. What inspired you to turn the camera on to document how you and your wife, Magda, handled this reality?
I was a student at Warsaw Film School at that time and first, just when Leo was born, I made a six-minute documentary called The Curse, where I used material shot while my wife, Magda Hueckel, was pregnant. It was far less personal film, rather a kind of parable of expecting a child and how the reality can turn into something you are not prepared for at all. Then I started to think of further developing this film, but at the same time I really did not want to expose our emotions so much; it felt much too intimate and private. It was then when I met a documentary filmmaker, Paweł Łoziński, who started encouraging me to turn the camera on ourselves. So finally we decided to do it, but bearing in mind that we would do it just for ourselves. And that is how the whole story began.
In the beginning, you and Magda are understandably depressed and overwhelmed by the prospect of parenting Leo through his disorder. But over the course of the film, you evolve—first, there’s painful ambivalence; then, tentative wistfulness and resignation, leavened with a dark and deadpan sense of humor; then, optimism; then, in the end, hope and joy. How did the process of making this film help you evolve as parents?
It somehow kept us going; instead of succumbing to depression, we could direct our energy into something creative. But I think the most helpful—and painful at the same time—part of the filmmaking process was the editing period, watching these scenes from our lives over and over again. It helped to see this situation from a different perspective. During the editing I wanted to trace our emotions as closely as possible and present the whole story honestly, as we really experienced it. So I had to go back to all these difficult moments and see them "from the outside."
Again, this is a very personal film, but the story of how couples learn to navigate the difficult shoals of parenthood—particularly when it concerns a child with a traumatic disorder—and embrace them fully and unconditionally is a universal one. What made decide that your story was one worth sharing with the rest of the world? And how have audiences reacted to your film?
After a few months of filming, I noticed how much we had changed since the first shot, and I realized that the whole journey we had gone through was very universal, that maybe other people could also relate to it. It was then that I felt that we should share this experience with others; maybe it could give strength to someone who was in a similar or even in a completely different situation, when you have to cope with any obstacle in your life, which seems impossible at first.
The audience reaction was amazing. People thanked us for the film and for sharing our story. Many parents who had children with various disabilities said that this was the first time they had seen the truth about their own reality, that they could see themselves in us.
And it was all over the world, no matter if it was in Europe, Asia or the United States. It was the greatest award; it showed that it was worth making this film and that it was indeed very universal.
The short documentary form poses a lot of challenges—but also opens many creative possibilities. At what point in your process did you know that Our Curse would be a short film, rather than a feature? What is it about the short form that appeals to you?
I always think that we should follow the story. Some stories develop into feature films, other are much better when kept short. The first cut of the film was a bit longer, but seemed a bit repetitive so I decided to make it shorter so that I would get the whole story I wanted with no redundant scenes. I think the more concise storytelling the better.
How was it to work with The New York Times Op-Docs? Did you have to change your film at all to meet their standards?
I did not have to change anything. They just changed the credits and text cards, so that they were in English, not in Polish. It was great working with them; thanks to that, people all over the world can now watch our film online and get to know our story. And we have received amazing feedback.
How is Leo doing now? Will he attending the Oscars with you and Magda?
Leo is doing great. In December, he turned four years old. He is a cheerful young boy with a wonderful sense of humor, and is doing very well in preschool. His speech is still a bit delayed, but we’re helping him with it and I’m sure he will overcome this too. You can follow our story on our blog, which is now available in English.
Unfortunately, he is not coming with us to Los Angeles. I would be really afraid to take him on a such a long journey by plane with the ventilator, especially as it has to be connected to a power source; the battery lasts only for about four hours. And I think he would not enjoy it so much after all. So he is staying home with his grandparents and a nurse.
But we will definitely come back with him, once he gets a bit older and will not be dependent on a ventilator. We are now gathering money for an operation to implant a breathing pacemaker, which can replace a ventilator, and we will be able to get rid of the tracheotomy. Then travelling with Leo will be a lot easier.
You can see Our Curse at DocuDay LA, the IDA's annual celebration of the feature and short documentary films nominated for the Academy Award®. The film will screen at 11:25 a.m. on Saturday, February 21, at the Writer's Guild of America Theater as part of Shorts Program I with fellow nominees White Earth and Crisis Hotline: Veterans Press 1.
Tom White is editor of Documentary / documentary.org.