A Heartwarming Story of Courage and Determination
New Jersey stillbirth mom Debbie Haine Vijayvergiya proposes and gets important legislation passed by Governor Chris Christie in just one year!
New Jersey Governor Chris Christie signs important stillbirth legislation into law!
Read the Bill
The power of a grieving mother. . .
“There are no words that can adequately describe how I feel. After losing Autumn, I promised myself that I would do whatever I had to do to ensure that other families didn’t have to suffer the way that we did. My hope is that with this law we can start to make a real difference and improve stillbirth outcomes here in NJ. However, this is just the beginning. I would ideally love to see the Autumn Joy Stillbirth Research and Dignity Act serve as a model for legislation to be passed in other states.” Debra Haines Vijayvergiya
Here is Autumn Joy’s story:
285 grams. That is what our baby weighed when they performed the autopsy. “Baby,” “dead,” “autopsy” … three words that are not meant to go together.
But for me, they did. And I am not alone. Fetal demise, more commonly known as stillbirth, causes approximately 26,000 deaths a year in the United States — more than the deaths resulting from SIDS and congenital anomalies combined.
I have been pregnant four times and have one child. I had not heard of fetal demise until last summer, when, 22 weeks into my pregnancy, my obstetrician could not detect my unborn baby’s heartbeat.
It started off as a regular checkup. That is, until the heart beat monitor on my belly failed to register anything. The silence was enough to make my own heart stop.
I finally heard something and I practically screeched in delight. But the doctor told me I was hearing my heartbeat, not my baby’s. As I started to cry, she suggested that we do an ultrasound because sometimes the baby can lie in an awkward position, making it harder to detect the heartbeat.
As she called the nurse, I could feel the pounding of my heart increasing with the escalating panic in her voice. I was breathless as I stared into the black silence of the ultrasound monitor. No sign of life. It was any expectant mother’s worst nightmare.
After repeatedly telling me how sorry she was, the doctor left me alone to make “my calls.” I couldn’t comprehend how, in a matter of minutes, I had gone from blissfully pregnant to having a lifeless baby inside me.
How could I pick up the phone and call my husband? What words could I possibly use to tell him our baby was gone?
My husband found me 30 minutes later, frozen on the examination table. Without much time to let this news register, we had to decide on a plan of action. The baby had to come out. My initial reaction was that I could not, would not, deliver this child. Delivering a baby was the definition of life and I could not give birth to a lifeless baby.
Before I knew it, I heard myself inquiring about an autopsy. “Autopsy”… it just rolled off my tongue. It dawned on me that if we did an autopsy, then I could find out what had happened. And finding out what happened was the only way to make sense of the senseless. It was at that moment I realized delivering the baby was my only choice.
As I waited in a hospital room, the day wore on in a blur … doctors, nurses, psychiatrists and social workers. Who knew there were so many decisions involved with birthing a “sleeping” baby? Do we want to hold the baby, do we want the baby to stay in the room, do we want pictures of the baby/with the baby, do we want hand/footprints, funeral, etc.? How did they expect us to make such decisions under such duress? For us, it was the equivalent of someone saying, “Your family member just passed, would you like us to make handprints in order to commemorate them?” It was an inconceivable idea that we didn’t understand at the time. We said no to them all. The impending birth was more than we could handle.
About 4 a.m., I turned to my sleeping husband and informed him that it was “time.” I remember the hot tears streaming down my face, feeling as if I wanted to die and the kind voices coaxing me to keep pushing.
I felt so alone, so cheated, so very broken. I felt like a failure as a wife and mother. The autopsy showed that our daughter was perfectly healthy but had died due to a stricture in the umbilical cord, which resulted in her oxygen source being cut off.
I certainly wasn’t ready to face the world with what had happened. And as I quickly found out, it wasn’t just me who was unprepared to handle this. The medical staff didn’t know what to say or how to say it. Friends and family were unsure of how to approach the subject. I think most felt that if I looked together, I was together, reinforcing silence as the default approach in coping with the situation.
The topic of stillbirth is taboo in our society and we have a tendency to pretend it doesn’t happen, so we don’t talk about it. This has to change. Thousands of families endure the pain and trauma of stillbirth every year, and until we as a society acknowledge this and talk openly about it, health care professionals, friends, family and patients will remain unprepared to help their loved ones.
Federal agencies invest in research to study the causes of stillbirth and find ways to prevent deaths, yet research gaps exist. Beyond research, so much more can and needs to be done to raise medical awareness and societal acceptance that stillbirth is a very real occurrence.
The first step is to create a national standardized definition for stillbirth. States define stillbirth differently (a loss at 16 weeks is a stillbirth in Pennsylvania; but in New Jersey, its 20 weeks), so researchers can’t accurately collect data on the true extent of these births. Without good data, research efforts are compromised.
Second, we need improved and expanded training for pathologists to perform perinatal autopsies. An autopsy on a stillbirth requires very specific training, which most pathologists do not have. Without thorough autopsies, researchers are limited in the data they have for study and analysis into the causes of stillbirth.
There is also a dire need to establish more comprehensive medical and emotional support protocols for before, during and after birth for mothers and their families.
Last, increased subject-matter training for the doctor’s office and hospital personnel would help ease the trauma and prepare everyone involved for the immediate and longer-term decisions and issues that lie ahead.
The healing process hasn’t been perfect, but I am doing better every day. Life has returned to some kind of normal. It’s definitely not what normal was before; it never could be. Too much has happened. But it is our new normal and we’re moving forward one day at a time. Part of our moving forward is doing everything we can to help make sure other families who experience the trauma of stillbirth are better prepared and supported than we were.
Congratulations to Debbie and her family; husband Chetham, Maya and Gavin