A Chance to Grow
Production Notes from a Digital Documentary Film
by Claire Panke
There's a steady current of life-affirming energy that runs through a neonatal intensive care unit, or NICU, where premature and critically-ill newborns begin their lives. As a neonatal nurse, I have felt this energy transcending the beeps and buzzes and fluorescent lights, its source found among the families we encounter, and the little ones themselves. In this arena where birth and death linger precariously close to one another, these infants respond with a primal sense, an instinctual clinging to life.
Concerns about birth, children's health, and family stability resonate within all of us, from Harlem to Hollywood, and the crisis initiated by premature or complicated birth touches many lives outside the scope of the immediate family. However, the public remains largely unaware of the prevalence of neonatal intensive care, or the specialized facilities it requires. With the continuing advancement of fertility science and the technology to save premature and at-risk infants, this information becomes especially crucial.
The NICU is truly an equal opportunity employer, an unexpected detour for a host of families: black, white, Asian, and Latino, straight and gay, wealthy and welfare-dependent. Here up to 12% of all newborns spend their first days, weeks, or months. Every year in the United States, more than a quarter million babies are born with low birth weight, and preterm delivery is associated with over 5 billion dollars in annual health care costs.
Recent advances in neonatal medicine have dramatically improved survival rates, with babies born as early as 5 months gestation able to survive outside the womb. We've all heard about NICU's lately due to septuplets and octuplets, but much is missed by the media's focus on high-tech "miracles." Often lost amidst the cascade of technology are the tiny patients, as well as their overwhelmed parents, who find themselves thrust into an alien world.
Eight years ago, I began to merge my experiences in the NICU with my background in writing, film and photography to develop A Chance to Grow. I have always been inspired by parents' courage and insight, and know that having a medically fragile newborn is a life-altering event, one which profoundly affects parents' lives long after their infant comes home from the hospital. I wanted to make a film that allows families' voices to be heard, to focus on the human side of health care rather than the rising tide of technology.
The NICU can be an extremely stressful work environment, delivering a steady stream of families in crisis and ever-smaller preemies that sometimes face a lifetime of medical problems. You learn to tolerate the
uncertainty and unpredictability that go hand-in-hand with modern neonatal medicine, but many complex ethical questions remain. I remember arriving home one evening after a particularly draining 12-hour shift, and noticing that the can of soup I made for dinner weighed more than the baby I had taken care of that day.
Clearly these difficult issues need to be part of any film about the NICU. But I also wanted to emphasize the positive aspects: the close relationships that form there, the profound impact this environment can have on professionals, the healing power of touch, and how the NICU experience can transform parental love into its purest, most elemental form. Fueled by the stories I have witnessed firsthand, I wove these initial ideas into a proposal for a documentary film class at NYU, and brought the project to a screenwriting seminar later that year. The topic met with great interest, and Little One Productions was born.
I began by researching current trends in neonatal medicine, speaking with NICU families across the country, and investigating the emerging technology of digital video. I applied for the first of many grants in 1995, setting up camp at The Foundation Center here in New York and initiating what would be a long, largely futile search for funding. I tried to cook up creative ways to find support, and began a grassroots fundraising campaign. With the help of a small group of family, friends, former classmates, and NICU parents eager to see this film made, I had enough to money get started.
While not my original gameplan, I ended up shooting the entire film at St. Vincent's Hospital in New York City, my place of employment at that time and, incidentally, my place of birth. I not only had unique access to these stories, but the parents knew me as a partner in their children's care, establishing a foundation of trust that allowed for intimate, candid responses. Rather than feeling like I was "stealing" their stories, I tried to help each parent unravel their own sense of meaning as they shared their experiences via the camera. Production, which lasted two and a half years, began in April 1997 with a surprise that mirrored the unexpected events of any premature birth.
When I first met Keesha Duncan, she had been placed on strict bed rest after her water broke 25 weeks into her pregnancy, just under six months gestation. A few days later, as we interviewed her, she expressed many fears and concerns, knowing that her baby would be premature, and that she would be handling this as a single mother. We all thought Keesha would have her baby about 2 weeks later, but at 4:30 the next morning, a mere 6 hours after we left her room, Keesha called me in full labor. With my DP leaving town, I quickly perused the camera manual and ran to the hospital, just in time to catch the birth of Zachary, weighing in at just over 2 pounds. That was three years ago, and it's been amazing to follow the transformation in both Keesha and Zachary.
Our second story follows Rami, born nine weeks early, whose tiny, fragile appearance at birth resulted not only from prematurity, but a condition that hindered his growth in the womb. Born by emergency C-section, Rami continued his development within the high-tech NICU, and his parents Ellery and Michelle remained at his bedside most of the time. One day, his nurse noticed that he had grown listless and was breathing rapidly. Rami had developed a serious, life-threatening intestinal infection.
The film includes follow-up footage of the other two children, but Rami was just turning one year old as the film was being completed. Any residual effects, including some delayed motor skills, have just begun to emerge, but with frequent rehab home visits, Rami is doing well. While viewers may be curious about his present condition, such questions point to the uncertain outcomes that are so integral to NICU experience.
Finding yourself in the NICU can be especially shocking following a full-term pregnancy. John and Kathy Servino's son Jake was supposed to be born at a low-tech maternity center. When their allotted 24 hours at the
center was nearly up, they opted to go to a hospital. Forty-five minutes after arriving at the hospital, Jake was born with a previously undetected birth defect, and was in the operating room two hours later.
I was among several of Jake's nurses in the NICU, and had the privilege of placing him in his parents' arms for the first time, a moment that still moves me when I discuss it. John and Kathy documented Jake's 2 month NICU stay on home video, and A Chance to Grow incorporates some of this footage. Now an active eight-year old, Jake has begun to experience learning difficulties, and his parents have struggled to gain recognition in the educational system.
While I originally wanted the film to unfold without narration, it became clear that these highly-charged stories needed a kind of grounding wire to orient the general viewer. I chose to shoot on a SONY DVX-1000 digital camera, well-suited for the low-light, intense environment of the NICU, where a larger camera would intimidate the families and annoy the staff. Its small size proved especially handy when I filmed the arrival of our first set of quadruplets, followed two hours later by a set of triplets.
Eight years is a long time to incubate a project, and I have made many personal and financial sacrifices to see this film through. The unpredictable nature of shooting in the NICU yields its share of dilemmas, and I'm all too familiar with the challenges of bringing a first film to life. I endured the unexpected collapse of my original fiscal sponsor, with a resulting loss of funds, and have become well-versed at the fine art of rejection. But I'm also persistent.
Through grassroots efforts, I raised over $70,000, the majority of donations coming from a base of 215 individuals, giving from $10 to $5,000. I screened A Chance to Grow as a 10-minute work-in-progress at the 1997 Independent Feature Film Market, which yielded valuable contacts. I found a new fiscal sponsor for the film, The Center for Independent Documentary, and was able to secure a few small grants from foundation and corporate sources, including the New York State Council on the Arts.
March 1999 was a particularly good month, as A Chance to Grow was awarded the Roy W. Dean Film Grant and I was named Maternal-Child Nurse of the Year by the Greater New York March of Dimes. Later that year, I met Jonathan Stack, who eventually became the film's executive producer and created a second home for the film at Gabriel Films. Jonathan's involvement in the
project ushered in a co-production deal with The Discovery Channel, where the film was broadcast as a one hour special on October 7th, 2000, and will be re-broadcast on December 2nd, 2000.
With the vast impact of a cable broadcast and an outreach campaign that includes panel discussions, it is my hope that the film will educate the public while empowering families to become advocates for their own needs among professionals, policymakers, and the public. In addition, dissemination of A Chance to Grow among health care, education, and social service professionals will influence the way caregivers interact with these children and their families, reminding them of the beneficiaries of their care, the new lives most affected by the new technology.
NEONATAL INTENSIVE CARE - A BRIEF REVIEW
A brief review of perinatal statistics reveals the critical role newborn intensive care plays in children's health for thousands of families throughout the United States and abroad.
¨ LOW BIRTH WEIGHT (under 5 pounds, or 2500 grams) More than a quarter million babies are born annually in the United States with low birth weight, a major contributor to infant mortality and morbidity. Currently, 80-90% of infants weighing under 2 pounds survive, but low birth weightinfants are 2-3x more likely to experience long-term disabilities, and account for 10% of all health care costs for children.
¨ PRETERM DELIVERY About one out of every 9 babies is born preterm, often for unknown causes. 17% of black babies are born preterm, while the overall rate was 11.4% (as of 1996). Preterm delivery is associated with over 5 billion dollars in annual health care costs.
¨ MULTIPLE BIRTHS Since 1980, the number of twins has increased by 52%, and the number of higher multiples by 404%. Twins have a higher incidence of cerebral palsy than singletons, and in general, multiples have a higher incidence of low birth weight, infant mortality, and maternal complications.
¨ RACE Both prematurity and low birth weight are more than twice as common among African-Americans than in other races. As a result, more than half of NICU admissions are black infants, whose overall rate of death is twice that of white infants.
¨ TEEN PREGNANCY Teens deliver approximately 30% of all low birth weight infants, with 12-17% born to mothers under 15 years old.
¨ DRUG EXPOSED INFANTS Drug-exposed infants are four times more likely to be low birth weight and three times more likely to die before their first birthday than non-exposed infants.
¨ INFANT MORTALITY America's infant mortality rate, considered an indicator of overall health conditions, lags behind 23 other industrialized nations. Mortality rates are higher among infants that are preterm, low
birth weight, male (21x higher), or from a multiple pregnancy (5x higher).
¨ CONTRIBUTING FACTORS When assessing low birth weight and preterm delivery, epidemiologists have identified poverty, poor nutrition, inadequate access to prenatal care, minority status, substance abuse, AIDS,
and teen pregnancy as risk factors contributing to these hallmarks of neonatal morbidity. As a result, many infants from urban, underprivileged, and minority backgrounds require newborn intensive care, producing approximately thirty percent of all Medicaid expenditures for maternity care.
We all thought Keesha would have her baby about 2 weeks later, but at 4:30 the next morning, a mere 6 hours after we left her room, Keesha called me in full labor. With my DP leaving town, I quickly perused the camera manual and ran to the hospital, just in time to catch the birth of Zachary, weighing in at just over 2 pounds. That was three years ago, and it's been amazing to follow the transformation in both Keesha and Zachary.