I have spent many years working both directly, and in advocacy roles, with families who have experienced a tragic loss related to SIDS or other sudden and unexpected infant death. These losses are sudden, devastating, and life altering for families. One unspoken worry when a death happens to someone so young is that their potential will be lost when death happens so early in life. And yet, I believe, every life has an impact. I don’t just believe that, actually. I know it.
I read one time that the death of an infant impacts 200 people. That assertion was not backed up with rigorous data or social network analysis (I think I may have read that statistic before ‘social network’ was a familiar term, let alone a methodological approach). I have quoted this estimate to families as a comfort, but in reality I think it’s an under-representation. Let me just take one small, tiny case in point. There are many others, too. But tonight, let me look closely at just one of these tiny children. I will call him “Jack.”
Jack died, unexpectedly, at age 6 months. His parents were devastated, and his family was in deep mourning. They lived in a very rural community. One of their neighbors, who happened to be a social worker, had met a woman in the nearby city while she had been in school. That woman had recently expanded a program to support grieving families to reach beyond the city and into rural counties. That same woman had hired me, from another state where I had supported families living through these same challenges, just a few weeks prior. And so it was that the neighbor of the woman whose baby had died called me on the phone during my first week of working (and living) in a completely different state to ask if I could drive down to visit and provide counseling. Which, of course, I did.
When I visited this grieving woman in this tiny, rural town, she showed me Jack’s picture and I was grateful to see his image and connect her stories to this image of a beautiful baby. I also took time to meet the neighbor who had referred her. We kept in touch and I began to learn more about the high infant mortality and corresponding support needs of this rural area. Being from a rural area myself, albeit halfway across the country, the needs and capacity of the rural community reached out and took hold of me. Eventually, we conducted a formal needs assessment and I wrote a grant. We had the good fortune to be funded. I hired that neighbor to work on the grant project. That grant touched over 1500 women through education and depression screening, and offered direct intervention to 200 depressed and/or grieving women over five years. And it reinforced what I wanted to do with my newly emerging research career.
I took my knowledge from that program and have gone on to another state and a faculty position to conduct research integrating mental health support into maternal and child health home visiting programs that support women and families, especially in areas with high rates of fetal and infant mortality, significant poverty, and sometimes few resources. Hundreds of women (and hopefully thousands over my career) will have better access to education, services, and support from the amazing organizations with whom I partner. Today, our research team made the first visit to our four newest partner communities around the state. We are poised to do even more meaningful work in partnership with these communities. The potential and expectation is palpable.
I also became involved with an amazing organization, the Pregnancy Loss and Infant Death Alliance (www.plida.org) and eventually served on their board, and later as President, now past president. I tell the story of families (like Jack’s) to professionals around the country. So now, I work daily to build better bridges to support grieving families as well as mothers who experience mental health challenges in pregnancy and postpartum. And, I work with professionals internationally doing the similar things in their own communities to support their own contributions to quality care and compassionate practice.
The point of light here is not about my past, present or future work. It is about babies like Jack, and people like Jack’s parents and family and friends. It is about what happens after a death when feelings and experiences are shared and people begin to care in different and more expansive ways. It is about what happens when we are touched and transformed and are willing to act on that transformation and make a difference.
People are changed. Lives are impacted. Light is spread.
For Jack…and for all the amazing yet short lives who have touched my journey…your lives have not only impacted 200. Your lives have impacted thousands.
Each one of you is a small, but brilliant, point of light.