How my pregnancy loss led me to advocacy work

April 30, 2021 • News • 6 minutes to read

April 30, 2021 News 6 minutes to read

By Jackie Mancinelli

As the sun streams through the bay window, I watch my daughters play in the playroom—my three-year-old in her Batman cape and mask, my 16-month-old toddling around in a dress-up doctor’s coat. The Weeknd’s “Blinding Lights” is playing for the umpteenth time, and both girls are dancing to the music. I cradle my coffee and think, I never knew that this is the shape my family would take.

Blissful naiveté

The journey that my husband and I took to get to our family today is filled with medical terminology: missed miscarriage, fetal maternal hemorrhage, Antibody-D, Kleihauer-Betke, MCA Doppler, biophysical profile, jaundice, Rh disease, blood transfusions…

In 2014, “miscarriage” was an unfamiliar term to me. I kept my first pregnancy a secret, believing I was not allowed to tell anyone until after 12 weeks along. As my students worked, I would find myself touching my stomach, smiling to myself. I saw my students talking in hushed whispers, looking my way. I imagined telling them in just a few weeks. They would all say, “I knew it!”

Instead, my husband and I heard the doctor tell us in clinical terms, “It is no longer viable. Here are your options…” Just shy of 12 weeks, we lost our first pregnancy.

I chose not to tell anyone about my miscarriage for over a year. I buried it deep inside of myself, locked it away, and refused to talk about it. Even to this day, I cannot quite explain my reasoning. I remember feeling a mix of shame, guilt, and embarrassment. I thought I was the only one who had ever gone through this, and I was afraid that people would assume that I did something wrong. I often wish I could go back in time and tell the old me that I should have talked about it, should have confronted it, should have dealt with it. Should have, should have, should have.

We said hello and goodbye

When I became pregnant again with our son, I was terrified. I was on edge until we hit the 12-week mark. After that, I assumed that our only outcome would be a house filled with dirty diapers and spit-up covered blankets. The pregnancy was uncomplicated and typical; none of my doctors were worried.

My students watched my body morph and grow throughout the school year. They whispered behind their hands as I sipped ginger ale at 7 a.m., and they cheered when I announced my pregnancy. They took care of me by moving classroom furniture for me, bringing me baby shower gifts, and even carefully purchasing fruit that they learned was healthy for a growing baby.

On Monday, May 16, 2016, I went to work as usual. As I sat in the first class of the day, I had searing lower back pain. I shifted in my seat and made eye contact with one of my students, Darren, from across the room. He silently mouthed, “Are you OK?” I nodded and smiled reassuringly. He was one of my kindest students, and he had taken it upon himself to check on me daily. I could tell he was worried, but I tried to pretend that everything was OK.

By 11 that evening, I was being rushed to the operating room (OR) with my husband at my side. Our son was showing signs of distress, but the doctors were convinced that everything would be fine if he were delivered and brought to the neonatal intensive care unit (NICU).

As we passed through the hospital, doctors and nurses called out, “Congratulations, Mom and Dad!” We smiled through our fear and panic. Once Richard was delivered, the OR went oddly quiet, and then there was an eruption of movement. The NICU team suddenly multiplied and despite my screams for answers, no one would talk to me.

My husband vacillated for a moment—stay with me or go with our son? I said, “Go with him and stay with him. Don’t worry about me.” I am thankful that as Richard fought for his life, his dad was there to hold his hand.

Jackie Mancinelli founded Start Healing Together, a support group at Eastern High School for staff struggling with the loss of a child, miscarriages, and infertility.

The kindness of others

Grief cannot possibly be put into words. I have tried to explain it, to relate it to another type of personal event, but nothing does it justice. It carries this weight with it that never seems to go away. One day I will feel light, and the next I will feel like I have to drag my feet to move. In the weeks after Richard’s passing, I could not wrap my mind around menial tasks: going grocery shopping, cooking, having a conversation about the weather with a neighbor. I felt like I had to relearn how to go about my daily life.

That summer, I cleaned my school’s classrooms with our custodial staff. I pushed myself to get out of my house and to engage in life again. The custodial staff have no idea how much they helped me that summer. They gave me the confidence to tell my story and to feel a bit like myself again.

It was on one of those summer days that I happened to run into my former student, Darren. He was stunned to see me, and I did not know what to say. I was unprepared for how to talk to my students. They knew what had happened, but I had not mentally rehearsed this moment yet. He began to cry and told me how sorry he was for me. He said that he asked his church to pray for my family. It was a moment that I will never forget. He saw me as not only his teacher, but also as a fellow human. He treated me with kindness and compassion.

Attempting to return to “normalcy”

I was anxious about my return to work in September. I was eager to return to my classroom, to return to the milieu that made me feel most comfortable. But I also had racing thoughts: What will my coworkers be like? What will they say? Will they say anything at all? Will all of my new students already know? Will they feel uncomfortable in my classroom?

I had no idea how to navigate this new stage of my life. I felt like I lived in a sort of limbo—there was the old, pre-loss me and the new, post-loss me. I wanted to engage in the typical banter with my colleagues, but I also wanted to acknowledge what had happened. I did not know how to manage that dichotomy, and neither did anyone else around me.

NJEA opened a door

Life eventually gained a rhythm, and it was not until recently that I felt like a fundamental change should and could occur. I attended an NJEA-sponsored workshop on supporting members through miscarriage and stillbirth. I learned that bereavement days could potentially be used for pregnancy loss and that members may be entitled to New Jersey Family Leave Insurance (NJFLI) benefits.

I thought back to my miscarriage. I was a brand-new hire to my school, and I was afraid to use multiple sick days. It never occurred to me to ask for support. I thought back to my infant loss. I never thought to apply for NJFLI benefits. Instead, I took several weeks off, unpaid. With this new information, I began to plan, and soon, Start Healing Together was born.

Start Healing Together

Start Healing Together is a group of over 20 staff members at my school. We are dedicated to informing members of their rights, providing emotional support, and directing them to helpful resources. Some of our members have experienced pregnancy loss and/or infertility personally, some support loved ones that have, and others simply want to offer an empathetic shoulder.

When I lost my son, I received multiple condolence emails from my coworkers. Many of the messages echoed the same sentiment: they also suffered losses. And then, when I asked for members to join Start Healing Together, even more of my coworkers shared their stories. These were men and women with whom I worked every day, but how well did I really know them? How often does pregnancy loss and infertility happen? Was I truly as alone as I felt?

As it turns out, these are common occurrences. According to the March of Dimes, miscarriage occurs in 10-15% of pregnancies. The Centers for Disease Control (CDC) states that stillbirth occurs in 1 in 100 pregnancies. The March of Dimes explains that neonatal death occurs in 4 in 1,000 pregnancies. The CDC has found that infertility affects 12% of women aged 15-44 years old. Statistics for male infertility are more unclear, but 9% of men aged 25-44 have sought fertility advice. So if these numbers are so staggering, why do we remain silent?

I know that for me, shame kept me silent after my miscarriage. After Richard’s death, I found that silence was not an option. I needed to say his name, needed to memorialize his short life, needed to help others through this heartbreaking grief. I work through my own grief by providing support to others.

I know how important a support system can be, how important an open dialogue can be, how important telling our stories can be. My son taught me to take this experience and help others, so that we can start healing together.

Jackie Mancinelli is an English and ESL teacher at Eastern Regional High School in Voorhees. She is the founder of Start Healing Together. If you are interested in starting a Start Healing Together chapter at your school, please contact Mancinelli at jackie@starthealingtogether.com.