By Eva Trieger
SAN DIEGO — “I only have half a heart, but that’s only half the story,” said then-eight-year-old, Bowen Hammitt. Bowen was born with Hypoplastic Left Heart Syndrome. This means that effectively, the entire left side of his heart was small and underdeveloped. The compromised mitral valve, left ventricle, aortic valve, and aorta were detected in utero during a twenty-week ultrasound, and Bowen’s parents were faced with some tough decisions.
Congenital heart disease is not rare and affects 1 in 110 babies with varying degrees of severity. Treatment options offered to Sarah and Matt Hammitt were compassionate care, a full heart transplant, or three surgeries intended to extend Bowen’s life. A documentary, feature-length film, Bowen’s Heart, reveals the challenges, fears, and hopes of Bowen, his three siblings, and his parents. The Hammitt family and the co-directors of the film, Lexi and Zach Read, sought to develop awareness, empathy and support for families living with chronic illness. Their goal was most certainly achieved.
According to Sarah Hammitt, when he was born “Bowen looked perfect on the outside, but his heart was broken.” Due to his fragility and the uncertainty of his survival, all family members were asked by hospital staff to hold the infant. The prognosis was that he would likely not survive the week. With intense and expert medical care, Bowen survived the few days until his first surgery. The anxious parents stayed in his hospital room until staff ordered them to go home and get some sleep. Bowen remained in the hospital for 12 weeks, while Sarah spent every moment with him and his extensive care team. At the end of the 12 weeks, Bowen came home and Sarah, Matt, and Bowen’s two big sisters had to figure out how to care for him.
In a phone interview, Sarah explained that her modus operandi for dealing with the unknown is to research. She enmeshed herself in learning all about HLHS and became expert at inserting the nasogastric tube, which would provide food, medications and lavage the stomach. A great deal of support came from the community, grandparents, and the Hammitt’s significant well of faith. Matt, a musician, also had access to a larger community via the radio.
Following the trauma of the first surgery, the Hammitt family settled into a rhythm of sorts and life went on. Sisters Emily and Claire looked out for their little brother. Sarah continued to homeschool and all seemed to be going as well as could be expected. In 2011, it was time for the second surgery. Fortunately, things went well ,and Bowen continued to grow up and learned to administer oxygen when he needed it, or to pace himself when he tired out, recognizing that his organs were being deprived of oxygen.
Dr. Zampi, pediatric cardiologist, stressed the importance of having this third surgery to provide Bowen with the greatest quality of life. However, Sarah felt that he was living a pretty good life. Typically, the third surgery is performed by the age of five. In a phone call, the doctor told Sarah, “He is functionally limited” which she countered with ,” He’s swimming right now.” Dr. Zampi responded, saying, “Bowen is at risk of having a stroke right now.”
Sarah was in favor of “putting it off because it seemed that Bowen was living a great life.” She felt that the surgery was filled with such risk. “A minute with him was worth it. Fortunately, we got lots of minutes.” The difference in how Bowen’s parents dealt with the unknown and the risks made for a great deal of tension and frustration for both.
Matt observed his son finding it hard to keep up with “cool new friends.” As a father, he felt strongly that Bowen didn’t want to expose his weakness to his friends by needing to use his oxygen or opt out of activities such as climbing wall, swimming, or running. He felt that the risks of a third surgery were worth it.
Their arguments were not lost on the children, who overheard the heated exchanges between Mom and Dad. When asked how they felt about the impending surgery, Emily, 13, said, “Bowen is emotionally strong, sweet, and confident.” Claire, 11, said of her brother, “Bowen brings a whole lot to our family. We would be a whole different family without Bowen.” Lewis, then just six, innocently stated, “What if I cut my chest open and give Bowen my heart?”
Prior to the making of the documentary, Sarah felt Bowen was exhibiting more frequent symptoms and was struggling. Of the scheduled surgery, Sarah said she was scared of myriad things that could result from it, “ultimately his death, brain injury, pain, my marriage and the impact on our other kids.” Bowen was eight years old at the time of this third surgery. He tells the interviewer in the film that he likes his life. He loves being with his family, riding his dirt bike, and watching TV. He says he is grateful he is healthy.
Bowen’s realization about the precarious surgery is captured in a segment of the film where he is at a sleepover. He called his mother in tears and asked her to come get him. This had not happened previously, but is certainly understandable. The dawning of what he was about to undergo was obviously terrifying for all.
The surgery went well and Bowen and his family have continued to be grateful for each day they share. Despite the fact that Bowen, now 11, has had a series of heart problems, he has survived an hour-long cardiac arrest, strokes, TIAs, and often experiences a lack of oxygen and becomes cyanotic. Sarah told me that 85% of couples who have a child with chronic illness divorce. Fortunately, she and Matt are learning how to deal with their divergent coping strategies in a healthier, respectful way.
I wanted to know if Bowen’s emotional state had changed post-surgery. His mother told me that he is clingier now, and evidences nervousness about that which he cannot control. She reminds him that those worries aren’t his and she tells him she will carry the weight of the world; he doesn’t need to. At times, Bowen shows acute sadness and darkness. Interestingly, he has never said, “Why me?” He reportedly doesn’t want things to be different.
I thought that it was so brave of Matt and Sarah to have another child after Bowen, knowing the traumas they experienced and the fears they live with every day. Sarah’s response was amazing. “I’m feisty. I didn’t want to end on such a sad note of child-bearing. I’m not going to let fear win.”
The filmmakers and the Hamitts made this documentary for four reasons. Firstly, they felt the film could make a thing of beauty, redeeming a tragic event. Secondly, Sarah was triumphant in overcoming her paralysis. She did not believe she could bring Bowen to the hospital for the third surgery, but she had to. Thirdly, if they committed to making this documentary, regardless of the outcome, it would be released to help others. Finally, the film was sort of a tribute to all families dealing with chronic illness, giving them a sense of “I feel seen.”
The film will be released on Global Digital Releasing on July 14, and can be found on several streaming platforms including Amazon Prime, Tubi, or Google Play.
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Eva Trieger is a freelance writer specializing in the arts. She may be contacted via eva.trieger@sdjewishworld.com
Very thorough coverage, Eva, without giving too much away.