I remember how empty I felt after my daughter was born. For eight months we had been preparing to welcome a baby into our home. My husband, Ethan, was in the process of washing baby clothes when we had to drop everything and rush to the hospital. We would return five days later with empty arms. Returning to silence and regret.

Janell Victory Allen was stillborn, one of the 26,000 babies who are stillborn every year. Our lives were forever changed by her death and we knew something must be done. I began to reach out and talk to others who had lost their babies during or just after birth. I discovered that there are roughly one million losses per year in the US due to miscarriage, stillbirth and neonatal death. Many of these families were feeling exactly how my husband and I were: alone and full of regret. 

We regret not taking a family picture. We had just three hours to be a family, she was our daughter after-all, but we have so little to show for it. We regret not unwrapping the baby blanket to look at her tiny toes. We regret not having a funeral service. These are regrets that could have been prevented with guidance. 

So my husband and I set out to create a guide of everything one might need to create memories with their children while they are still on this earth. Including books and information on pregnancy and infant loss and where to find long-term support assistance. In our daughters memory, we started our nonprofit, A Small Victory.

The guide, which we have deemed a CARE (Compassionately Alleviating Regret Everyday) Package, has been well received. Nurses state that it is easy to use, parents state that they know, by using this bereavement tool, that they did everything they could with their children. They felt less alone and better able to cope in the days following their loss. According to a recent study conducted by Suzanne Pullen at San Francisco State University, 75% of women who have experienced a stillbirth not only felt like they didn’t receive enough information regarding their loss but also felt talking to someone who has had a similar loss would have been helpful¹. A Small Victory is offering this to not only mothers of stillborn babies but also those who have lost babies to miscarriage and within the first few months of life. 

We have had our ups and downs with A Small Victory. Basically, we are trying to change the way the medical community treats a loss. It is not something to just treat quickly and move on. The loss of a child during or just after pregnancy has lifelong consequences. Many medical providers see only the immediate and think they are doing enough. We, those who work with the mothers and their families in the years following their loss, know that there is not enough done. A Small Victory is trying to change that. 

In the three years since we have begun, over 200 families have received CARE Packages from A Small Victory, six birth care facilities have picked up our perinatal bereavement program and many more want to provide their patients with our guide. Unfortunately, changing the thoughts of a nation is not an easy task. Until recently, the death of a child was not something we talked about, instead we pushed it aside and hid it. Now families are speaking out about their children they want the world to know. A Small Victory is at the forefront of this movement encouraging parents and their medical providers to do more so that no grieving parent has to look back in regret.

Written by Liz Allen, founder and CEO of A Small Victory