Pregnancy & Infant Loss Awareness: My Story of Infant Loss

Finding out that you are pregnant after the wild rollercoaster ride of infertility is probably one of the most amazing feelings in the world. The immense joy and enormous sense of relief felt is completely euphoric. It’s literally a dream come true.

After an ectopic pregnancy, a two-year struggle with infertility, three unsuccessful IUI’s, two egg retrievals, and one mental health break, my husband and I found ourselves with one healthy embryo. “All it takes is one”, our doctor, Dr. Michael Drews, calmly reassured us. And he was right! After a successful frozen embryo transfer (FET) we were finally pregnant, and we could not be more ecstatic! All the dues we had paid to the fertility gods were finally paying off.

The next 37 weeks of my life were complete bliss. I enjoyed every part of pregnancy. Each pregnancy symptom I experienced was a celebration and every monthly milestone I reached was a victory. I happily planned our future as a family of 3.

My nightmare

On a frigid afternoon in January, my world was completely turned upside down. During a routine ultrasound, my doctor uttered the words that no pregnant mother should ever hear, “I’m sorry, there is no heartbeat.” Panic and confusion overtook me as I began to sob. “So, the baby is dead?” I asked. “I’m afraid so.”, he responded. I franticly called my husband and family in hysterics. “Why? Why?” I continued to ask. But there were no answers.

Later that night, on January 30, 2014, my daughter, Rhyan Ava Dinburg, silently entered the world. Stillborn. My firstborn baby was stillborn. Something I didn’t even know still existed. After her birth, I was bombarded with questions. Would I hold her, name her, agree to an autopsy… At some point, my brain began shielding me from my agony, because I have little memory of the days that followed.

I thankfully remember holding my beautiful baby girl. She was perfect in every way. She had her Daddy’s button nose and Mommy’s dark curly hair. A true heavenly vision. A memory that remains imprinted in my heart.

The darkness associated with the death of my child eventually began to consume my life. It was hard to do anything without succumbing to my painstaking grief.  Depression doesn’t begin to describe the agony that follows pregnancy and/or infant loss. But, with the right support from my family, friends, and mental health professionals, I began to dig myself out of the deep dark hole I was hiding in.

Hope in help

After months of living in the darkness, I met another mother who had suffered the stillbirth of her daughter. We commiserated together and I quickly realized that I was not alone in this journey.

Unbeknownst to many, approximately 24,000 babies are stillborn in the United States each year despite medical advancements that have been made. Most of these babies are born at a viable gestational age with no known cause or due to an undiscovered preventable cause. I never knew that I was at risk or that something like this could happen to me. I found myself compelled to do more.

See, it has always been in my nature to help others. I am drawn to others in need and even selected a career educating developmentally disabled students. I am also very passionate. There was no way that I was going to let my daughter die in vain. It became my mission to give purpose to Rhyan’s short and meaningful life by becoming a stillbirth parent advocate.

Over the past seven years, I have been busy doing what I can to shed light on this very taboo maternal health issue. I co-founded a nonprofit organization, The 2 Degrees Foundation, whose mission is to impact stillbirth outcomes, support families that have suffered a stillbirth through bereavement care, raise stillbirth awareness and education, empower expectant mothers, and advocate for appropriate stillbirth research and care.

I take every opportunity I am given to tell my story and promote hope. I have also had the pleasure of meeting with and supporting many women and families who have suffered pregnancy and/or infant loss. My journey, although not an easy one, has led me to become a strong and courageous loss momma.

When it rains, look for rainbows.

My story doesn’t end there. About a year after losing Rhyan, I found the strength to begin fertility treatments once again. Dr. Drews greeted me with a warm, gentle hug and an unwavering determination to help me grow my family. (And he did!) On January 29, 2016, I delivered a healthy baby girl, thanks to a superior fertility team and a first-rate maternal-fetal medicine team. As a bonus, a year later, our prayers were answered for the third time, and I gave birth to another beautiful baby girl on February 16, 2017.

Although our rainbows Skyelar Rae and Teagan Lane have restored much joy back into our lives, we never forget the path that led us to where we are today. Surviving a pregnancy and/or infant loss is truly a life-long journey. The grief changes over time as you discover ways to cope. But a broken heart is never fully mended. Today, I face different challenges as a mother who has experienced the trauma of a stillbirth. I still lean on my friends, family, and my therapist. We have found many ways to memorialize Rhyan and keep her memory alive in our home each and every day by celebrating her life.

October is Pregnancy and Infant Loss Awareness month. A month to honor all of those taken away from us far too soon. A month to educate others while shattering the stigma associated with pregnancy and/or infant loss. A month to join together and create positive change.

My advice to families that are currently in the trenches of losing a child is, take one step at a time. There will be good days and there will be bad days. Allow yourself to grieve at your own pace. This isn’t a race to a finish line—no one expects you to be “just fine.”  Do not be afraid to ask for help. Utilize available resources and lean on others for support. Try to let go of guilty feelings because this is not your fault. Be gentle and kind to yourself. Practice self-care and self-love. I know it’s easier said than done but try to find small moments that bring you peace and comfort. And always remember you are never alone.

Stacey Matarazzo Dinburg | The 2 Degrees Foundation

Stacey is the vice president and co-founder of The 2 Degrees Foundation, a nonprofit organization dedicated to impacting stillbirth outcomes in the state of NJ. As a mother of a stillborn daughter, Stacey has felt the need to turn her tragedy into a purpose. Stacey and her husband Sean’s firstborn daughter, Rhyan Ava, was born sleeping on January 30, 2014, at 37 weeks gestational age. She has since become an advocate for maternal health including infertility, maternal mental health, pregnancy and infant loss, pregnancy after loss, and parenting after loss

Over the past 7 years, Stacey has been an invited speaker at RMA of New Jersey’s series “The Doctor is in,” “The Stillbirth Management Conference” through the Partnership of Maternal & Child Health of Northern New Jersey, and has testified for the appropriate implementation of The Autumn Joy Stillbirth Research & Dignity Act in Trenton. Her stillbirth story has been featured in NY FOX 5’s Dr. Manny Alvarez’s “Ask Dr. Manny” news blog and Hackensack Merdian Health Views magazine.

Stacey is a certified special educator and studied behavioral psychology at Caldwell University. Stacey works full-time as an instructional facilitator and a teacher trainer at a specialized school for students with special needs.

Most importantly, Stacey is the proud mother of 2 beautiful little girls, her rainbows. She currently resides in New Jersey with her family.