One Mother’s Story of Perseverance and Love
By Amy Marchand Collins
RIPIN Family Resource Specialist, Neonatal Follow-Up Clinic, Transition Home Plus Program
I remember the moment I knew my life had changed forever. As I walked toward the neonatal intensive care unit (NICU) entrance to let in my parents and sister for our family meeting, I felt the track of my life change. Like a train smoothly shifts to a new track at the throwing of a switch, the news I had just learned, that BOTH my children had permanent hearing loss, had irrevocably changed the course and direction of my life. I didn’t know where I was now headed, but I knew for certain it was very different from where I had thought I was going just a moment earlier.
We already had been through a lot in our roller-coaster NICU journey with our twins, Elyssa and David, born nearly four months earlier at 24 weeks gestation – 16 weeks too soon. They had already been subjected to so much in their short lives: weeks on ventilators, beeping monitors, too many needle sticks to count, various procedures, numerous transfusions and medications, all in the quest to keep them alive. Until that moment, however, I had believed their prematurity was something we would eventually put behind us.
But permanent disability – in the form of such ‘morbidities’ as hearing loss, vision problems, cerebral palsy or cognitive impairment – is actually quite common among infants born as early as mine were. In a recent analysis of infants born at Women & Infants Hospital from 2005 to 2008, 64 percent of the 83 infants born at 24 weeks gestation survived. Of those, nearly half (43 percent) had at least one major impairment at their 18-month follow-up appointment.
I had steadfastly refused to look at the statistics on mortality and disability during my children’s NICU stay, only determined that my own children would not only survive but "be fine." In the years since, I have had to stretch my definition of "fine" to encompass and adapt to diagnoses of not only hearing loss, but also cerebral palsy for both my children and Autism and asthma for my son. Our lives are full of special equipment and intensive therapies, but immeasurably enriched by the presence of my children. I’ve learned to navigate the various systems that provide equipment and therapies to get my children what they need. That my children are as fine as they are today despite their diagnoses is in large part a testament to the great support and many services our family has received throughout my children’s lives, much of it indirectly supported or facilitated by Title V.
Here in Rhode Island, Title V is not used to fund any direct services, so it’s not a surprise that I wasn’t sure exactly how it connected to prematurity when I agreed to write this article. According to Deborah Garneau, director of the Office of Special Health Care Needs at the Rhode Island Department of Health, the state uses our Title V Special Needs funds to provide quality assurance and access to the special needs service delivery system. This system comprises an alphabet soup of organizations and programs that support families, some funded and overseen through the Department of Health, others through the Office of Health and Human Services.
One of those programs, the Pediatric Practice Enhancement Project (PPEP), places trained family members employed by the Rhode Island Parent Information Network (RIPIN) in pediatric offices and specialty practices around the state. These family resource specialists have firsthand expertise navigating the systems and provide peer support to families facing challenges they themselves have faced and overcome. For the past five years, it has been my privilege to support families in their transition from the NICU to home as the RIPIN Family Resource Specialist at the Neonatal Follow-Up Clinic at Women & Infants Hospital.
Amy Marchand Collins’ children were born at 24 weeks gestation and spent their first 129 days of life in the NICU at Women & Infants Hospital of Rhode Island. Since 2007, she has been a RIPIN Parent Consultant/ Family Resource Specialist at the Neonatal Follow-Up Clinic of Women & Infants Hospital. With Dr. Betty R. Vohr, medical director of the Neonatal Follow-Up Clinic, she recently published a book, Precious Premies: The Post-NICU Years, Inspiring Stories of Hope & Survival from the Littlest Babies in the Littlest State, which brings together 31 family stories spanning 31 years of the Neonatal Follow-Up Clinic at Women & Infants. The book is available for purchase on the hospital website, womenandinfants.org for $10 + $5 shipping & handling. Proceeds from book sales go toward a fund to support the needs of Follow-Up Clinic families.
DC Developing Families Center: A Treasure to the Community
By Tegan Callahan
Program Manager, Women’s and Infant Health, AMCHP
Senior Policy Manager, Government Affairs, AMCHP
The death of an infant is one of the most devastating outcomes for not only a family but also society itself. There are numerous risk factors that have been linked to infant mortality, many of which are related to the level of support, dignity and continuity of care a woman receives not only during her pregnancy but during the critical years leading up to it. The Developing Families Center (DFC) in Washington, DC is unique and on a mission to provide that critical support for low-income African-American families in Washington, DC.
In July, AMCHP staff visited the Developing Families Center to better understand the efforts underway in our own backyard to lower the infant mortality rate in Washington, DC. AMCHP staff were greeted by Linda Randolph, MD, MPH, the president and CEO and Ruth Lubic, CNM, EdD, the founder of the DFC and were given the opportunity to hear about the history of DFC and its model of care. The DFC is "the first collaboration model of its kind to offer continuous, uninterrupted care for women and their families during the important childbearing and early child-rearing years." The Community of Hope Family Health and Birth Center, staffed by nurse midwives and pediatric and family nurse practitioners; the Healthy Babies Project, staffed by community nurses, family service workers and utilizing mental health and fatherhood consultants; and the UPO Early Childhood Development Center with teachers and their assistants serving children from six weeks of age to their third birthday come together under the umbrella of the DFC to provide a unique level of support and care to the families who need it the most. This care is not provided in a vacuum; the community was involved at every level of planning and provides continuous feedback to the center through a community advisory board.
This model of care has been proven through results. The center boasts significant reductions in birth outcomes that are precursors of infant mortality: namely preterm birth and low birth weight; and reduced C-section rates at lower costs and greatly increased breastfeeding rates. Dr. Randolph proudly states, "we believe the relationships we establish with women and fathers-to-be before and during pregnancy, at birth and to the third birthday are essential components, as well as supportive services that promote empowerment."
As communities continue to improve and refine models of care, the Developing Families Center in Washington, DC is a beacon and treasure to the community. A client of the center describes her experience as, "[The DC Developing Families Center helps us] get to know how to help your children succeed. From before birth through the early years, I feel like a ‘pro’ and I’m helping others with what I’ve learned."