By Manny Alvarez, ,
Published October 13, 2016
Some of the toughest moments of my career have come when a patient experiences the trauma and devastation of losing a child. Whether it’s through miscarriage or stillbirth, the trauma can be a defining moment for a couple— especially those who have been struggling with conception for some time. For one of my patients, Stacey Matarazzo Dinburg, the death of her daughter at nine months gestation and her subsequent stillbirth moved her to speak out on the tragedy and become actively involved in finding a way to help others.
“I am a warrior dedicated to sharing my daughter’s story and helping to raise awareness on the taboo topic of pregnancy and infant loss,” Dinburg, who named her child Rhyan Ava Dinburg, said. “I refuse to let my daughter die for no reason or in vain. It is now my job to keep her memory alive, and to help others affected by such tragedy.”
Dinburg, who in January gave birth to Skyelar Rae Dinburg nearly two years after Rhyan’s death and is currently expecting her third child, found her calling through The 2 Degrees Foundation, a New Jersey-based grassroots organization which she helped create and continues to work with to help others cope with pregnancy and child loss.
“After I lost my daughter Rhyan I kind of immersed myself in researching and finding support, and I didn’t come up with too much,” Dinburg said.
What she did find were articles on Debbie Haine Vijayvergia, who presented the Autumn Joy Stillbirth Research and Dignity Act to New Jersey legislators after her own daughter’s stillbirth in 2011. The act, which was passed, is aimed at requiring the state to establish policies and procedures for handling each stillbirth as well as protocols for evaluating fetal death. Dinburg reached out and the two set out to find ways in which women could become advocates for each other and their children. In doing so they created The 2 Degrees Foundation, which is named for the likelihood that just a small degree of separation stands between you and others who have experienced pregnancy loss.
“There are so many women that are affected by it but you would never know,” Dinburg said.
Through the foundation’s website, mothers can find information on the many support groups and organizations available to help them cope with their child’s death and also celebrate and honor their memory. For example, Dinburg recently turned to The Tears Foundation to help commemorate Rhyan’s life, but did not know of its existence at the time of her death. The foundation has helped the family cope by featuring Rhyan in their memorial, and Dinburg would like to see others afforded the same opportunity.
“Just seeing my daughter’s name with my name brings me peace,” Dinburg said. “Just seeing her name makes me realize that she was here and she was a real child and we’re doing great things now.”
The 2 Degrees Foundation hosts events like barre classes and lunches to raise funding, which goes toward a number of efforts aimed at destigmatizing miscarriage and stillbirth. The funds help ensure that the Autumn Joy Stillbirth Research and Dignity Act is implemented at New Jersey hospitals, provides community bereavement support services and is assists with clinical stillbirth research aimed at improving outcomes. The foundation is also working with an organization that specializes in teaching doctors and nurses how to deliver bad news to patients as both women feel as though their experiences could have been improved.
According to the Centers for Disease Control and Prevention (CDC), about 24,000 babies are stillborn each year. Having treated some of these patients, I can tell you firsthand that many times the cause of these deaths is unknown, making it even more tragic for the parents. It’s easy for a mother to blame herself under these circumstances, making her grief all the more difficult to overcome. October is Pregnancy and Infant Loss Awareness month, and while there are remembrance days and social media movements to acknowledge it we need to be more vocal about this topic beyond October 31. Supporting organizations like The 2 Degrees Foundation and encouraging social media movements like "rainbow baby" photoshoots are small ways in which we can support the many women in our lives who have already given us so much.
“Helping others and giving back has really helped me with my own personal healing,” Dinburg said. “Grief is never an easy thing and we all handle it in different ways. But I survived – and I’m still surviving each day.”