The Beginning of Grief

By: Elaine de Leon

When you say it out loud, it sounds unreal: I have been pregnant twice. I have never felt a contraction. I have never taken a baby home from the hospital.

We lost our two babies – Francis and Zoe – 11 months apart. I was only 16 weeks pregnant with Francis when I dilated and my water broke. He was our first child and because of him, we learned that I had an incompetent cervix – a fancy way to say that my body can’t carry a pregnancy to full term without any medical interventions.

Even though we were devastated, understanding that there was not much we could have done to prevent his loss provided some comfort and gave us hope. Now that we knew about my cervical insufficiency, we can take the proper precautions to ensure our next pregnancy did not end the same way.

A few months after we lost Francis, we found out we were pregnant again.

We were excited, as most expectant parents would be. But experiencing a previous loss also brought complicated feelings to this subsequent pregnancy. While we were happy for the hope that a new pregnancy brought, we were always on edge for fear that every throb, cramp or pain could mean the beginning of something terrible.

After only 25 weeks of pregnancy, my water broke. Even though doctors assured me that pregnancies could continue even without an amniotic sac, I found myself needing an emergency c-section a just few days later when a prolapsed umbilical cord threatened the life of my baby.

I remember that day very clearly.

I had been admitted for hospital bedrest the week before, after I began dilate despite two cerclages (a procedure to help keep my cervix closed and prevent preterm labor). My husband Sam and I had just gotten used to our new routine: He would visit me in the morning so he could be around when my nurse checked for the baby’s heartbeat. Before he left for work, we would cross off another day in the calendar a nurse had taped up in my room, marking off another 24 hours with our baby safe in my belly.

The morning Zoe was born began as a routine morning. Just a few days earlier, a nurse had warned me that without an amniotic sac, it was possible for my umbilical cord to drop through my open cervix. Although rare, this is extremely dangerous as it can cut off oxygen to the baby and, in serious cases, cause a stillbirth. When this happens, she instructed me to stay as still as possible and pull the red emergency cord for help.

I’m still not sure how I had the presence of mind to remember those instructions, but I am glad I did.

Within seconds, there were at least a dozen people in my room. A nurse jumped into the gurney with me to help keep the umbilical cord in place as I was rushed down to the surgery suite. A team of doctors and nurses worked to initiate the c-section as quickly as possible as every second of delay put my baby’s life in jeopardy.  Movements and words were a blur.

Does the baby still have a heartbeat?, someone asked. As they cut me out of my shirt, I heard another doctor yell frantically, Do not start cutting until I tell you to. We don’t have her on anesthesia yet.

Soon, my high-risk doctor — who had performed my previous two surgeries — came to view. We’re going to do everything we can to help you and your baby, he said. That was the last thing I heard before the anesthesia took effect.

When I woke up a few hours later, I learned that our baby girl, who we named Zoe, had made it through the procedure. Like a proud father, Sam reported that Zoe was breathing on her own.

It would be another few days until I was discharged from the hospital. I developed a blood infection and experienced three episodes of septic shock – a complication of the emergency c-section. Once I was home, the guilt set in. It should still be me in the hospital.

I wanted to be the one to do all the work in making sure my daughter would survive. Instead, I was home and she was the one in the NICU fighting for her life.

When your whole heart is in an isolette in a hospital down the street, life is not what it should be. But we tried to make the most of this new normal. Sam and I celebrated each day that passed without bad news from the NICU. We picked out paint colors for the nursery. We made plans for a baby shower. As weeks went by, we allowed ourselves to hope.

And then one night, we received the phone call every NICU parent dreads. We are having trouble establishing an airway. Zoe may not make it through this, said the voice on the other line.

We were lucky the hospital was only ten minutes away because Zoe was gone just minutes after we arrived.

Even though I understand that there were circumstances beyond my control, it’s hard not to feel responsible for losing Francis and Zoe. I’m their mother. My only job was to protect them and give them life, and I accomplished neither. And although my husband would never assign any blame on me, I will always be haunted by the knowledge that it was my body that failed to give my children their best chance of survival.

Not only was I carrying the weight of profound grief, I was also burdened with the fact that my body was the source of that grief.

Several weeks later, we decided to hold a memorial service for our two babies, whose stories were so inextricably linked that it didn’t feel right honor one without honoring the other. The loss of Francis was supposed to be redeemed by the life of Zoe, because it was in losing Francis that we knew what to do to save Zoe’s life. In losing Zoe, it felt like we were losing Francis again. The grief was exponentially magnified.

Although the service provided an opportunity for us to celebrate the lives of our children and heal a little, we soon realized that it was just the beginning of our grief.

Sam and I will spend our entire lifetime grieving the babies we’ve lost, in ways big and small.

We are reminded of our loss daily, in how empty the house now feels even though our babies never took up physical space there. In the years and decades to come, we will grieve the toddlers whose first steps we will never see, the teenagers we will never send off to college, the young adults we will never walk down the aisle.

When you say it out loud, it sounds unreal: I have been pregnant twice. I have never felt a contraction. I have never taken a baby home from the hospital.

Instead, I have two heartbreakingly tiny urns and two shadow boxes filled with what is left of my children. The blanket they wrapped Francis in. The bonnets Zoe wore to help keep her breathing tubes in place.

And I have a lifetime of experiences that will never come to be, a lifetime of moments I will never experience with my children.

The memorial service is just the beginning. The grief, though it will wax and wane, will never end.


About Elaine de Leon

Elaine is a strategic communications professional based in the Washington, D.C. area. With over a decade of advocacy and communications experience, Elaine has helped organizations change the hearts and minds of people on various issues including health and wellness, intellectual and developmental disabilities, environmental and economic policy, criminal justice, and human rights. Elaine is a mother to two angel babies, Francis and Zoe, and serves on the Board of Directors of Share. In her free time, Elaine enjoys watching baseball, reading good books, and supporting northern Virginia’s burgeoning wine industry.

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