Hypoplastic left heart syndrome (HLHS) is a congenital heart defect caused by the underdevelopment of a heart in utero. The left heart doesn’t pump enough, leaving the right heart to do most of the work, pumping low-oxygen blood to the rest of the body. Babies born with the condition need immediate care, and even so, a third of them won’t make it until their fifth birthday. Those who survive live with a severely increased risk of stroke or heart attack, even if they receive surgery to improve their condition. Many patients ultimately require a heart transplant.

Bowen’s Heart is about Bowen Hammitt, who was born in September 2010 with HLHS. His father, Matt, was the lead singer of Sanctus Real, a successful Christian rock band. His mother, Sarah, was a stay-at-home mother to their four children. When Bowen arrived, it wasn’t clear how long he would live. Doctors allowed the Hammits’ other children to come visit the newborn and encouraged the parents to have their time with him before the surgeries began. After four months in the hospital, Bowen came home. One year later, he return for more open heart surgery. Eight years later, the movie picks up with the family in the leadup to yet another major surgery.

This particular surgery is one the Hammitts had, in fact, delayed by a few years due to how well Bowen’s life had gone up to that point. There were definitely emergency room visits, health scares and the necessity of a supplementary oxygen machine wherever Bowen went, but the relative “known” normalcy of that status quo could be usurped if any one surgery goes awry. Which does happen. It’s the heart, after all.

Directors Lexi and Zach Read wisely focus first and foremost on the difficult emotions and considerations behind such a momentous parenting decision. Being a parent is difficult; parenting a child with a disorder like HLHS is unimaginable until you’re doing it. There’s never a moment where Sarah and Matt are depicted as perfect or even fully confident in the choices they’re making. Although the tone of the film is ultimately loving and triumphant, it does a great job depicting the family’s raw emotional state. There are monumental decisions. There are no easy answers.

The documentary goes in-depth into the process of preparing a child for heart surgery, particularly infection prevention practices. It’s overwhelming. “What if I do it wrong?,” Sarah cries as the big day approaches. Bowen’s siblings wrestle with their parents’ focus on him, too, and the possibility of losing their brother. Matt tries desperately to balance his ability to connect with his son while subconsciously preparing himself for the worst possibility. The Hammitts are a Christian family, and their faith plays a big role in their lives and careers, but this is not specifically a faith-based film. Those seeking a message of faith will find it, but the documentary works just as effectively as the story of a family learning about and living with an uncommon situation.

The Hammitts started Whole Hearts, a foundation to help other children with an HLHS diagnosis. Like many documentaries, Bowen’s Heart serves to raise awareness about the condition and hopefully turn some heads in the direction of helping others living with the disease’s effects. Thankfully, this is more than just an informational piece: It’s also an emotional, well-told journey that goes pretty in-depth into the way HLHS changes a family. This is a thoughtful and powerful film.