On January 4th, 2016 my sister and her husband learned they were having a baby girl, and that their baby girl had anencephaly. Anencephaly is a life-limiting congenital anomaly in which the baby’s brain does not fully develop. Babies with anencephaly are not able to survive long after birth, assuming they survive pregnancy and labor.
My sister and her husband decided to carry their daughter as long as possible and hoped to donate her organs after she was born. They asked me to be their advocate and resource, with the task of seeing their wishes carried out. At that time, I was working as a nurse in the operative room. I had assisted with a number of organ procurement procedures and had several contacts in the field. With about 20 weeks left in the pregnancy, I was confident I could carry out their wishes.
However, as time passed, I quickly realized how few recourses were available for parents experiencing perinatal loss. I encountered one barrier after another, spending long hours on the phone attempting to locate an organization able to take my niece’s organs. It was not until my sister was in active labor that I got the call accepting my niece’s body for research. It brought my sister, her husband, and our family great comfort knowing her brief existence could make a lasting difference in the world.
This experience taught me not only how impactful perinatal loss is on families, but also how alone families are throughout their loss experience. If I, a specialty nurse, struggled so profoundly to find the necessary resources, how can non-medical families receive the care they need? I went on to get my doctorate degree, focusing my research on perinatal loss, grief, and bereavement. My ultimate goal is to help health care professionals better care for families experiencing perinatal loss through scientific research.
As I began my research, I could think of no better place to start than the parents experiencing loss. In my experience with my sister, I realized that as a medical professional I held many false assumptions about what parents experiencing perinatal loss would need. To avoid making further assumptions, my very first study invited parents who had experienced a pregnancy complicated by anencephaly to share their story with me. In asking them simply to share their story, my team and I were able to see what is important to parents, and how we can meet the unique needs of parents experiencing perinatal loss.
Without question, this was the most humbling journey I have ever been on. Finding enough willing individuals to take part in your research can be one of the more difficult aspects of a research project. My goal was to interview 24 parents who had had a pregnancy complicated by anencephaly. I hoped to interview at least eight people but decided to ‘reach for the stars’ and request university approval to interview up to 24 people. By the end of the first day of recruitment, over 30 parents contacted me requesting to take part in my study. By the end of the first week, over 80 parents had contacted me. I was absolutely flabbergasted. I had nearly four times the number of participants I was hoping for. Furthermore, the parents contacting me were not just asking for information. They were telling me the names of their babies, the exact date they were diagnosed, their baby’s birthday. They were sending me photos. Photos of their little treasured children that were no longer with them. And they were thanking me. Thanking me for “caring,” for “loving our babies,” for “taking the time to listen.” As I read e-mail after e-mail, I was mentally and emotionally overwhelmed by the responses. I just sat there and cried. I was honored, shocked, amazed, humbled. And I was made even more aware of just how meaningful these little angels are. These little angels the world would never know, these little angels that would change the lives of their parents forever.
From the start, one of the more heart-breaking things I learned was how shrouded in silence perinatal loss is. And so Project Poppyseed sets out to break the silence surrounding perinatal loss, equipping and empowering families and health care professionals with the knowledge and tools necessary to navigate the uncharted, turbulent waters that are the perinatal loss experience.
Where did the name “Project Poppyseed” come from? My sister and her husband did not want to call their baby “It” until they reached the point in the pregnancy, they could learn the gender of their child. When they learned they were expecting, their daughter was the size of a poppyseed. From that point to the 20-week ultrasound appointment, they referred to their child as their “little poppyseed.” As my niece is the inspiration for my research, I found it fitting to name my endeavors after her.