More than one million women experience pregnancy or infant loss every year in the U.S., yet many stay silent about their experiences. What if we were brave enough to break the silence? Empowered to declare, “My baby existed and mattered?”
In 2011, I was a newly-minted pediatrician and finally living the life I dreamed of after so many years of hard work. My husband and I announced my pregnancy with a series of growing bump photos. I felt great, ate healthy, exercised, and received regular prenatal care. But thirty-five weeks in, I experienced some issues that I thought were normal pregnancy symptoms. My legs were swollen. I got winded easily. I developed headaches, then upper abdominal pain. Worsening symptoms bought me a trip to the hospital.
I had severe pre-eclampsia. The look on my doctor’s face said what I already knew. “We have to deliver you now by C-Section.” I turned to my worried husband, then to the monitor, where I saw my child’s heart rate dropping, then said, “Please do what you need to do.”
As a pediatrician, I’ve often been on the other end of this scenario. But nothing prepares you to be on the other side of that blue partition when things go wrong. You can’t see or feel anything, but you can hear, and the silence was deafening. Why wasn’t my baby crying? “Something is wrong; he is very swollen.” Click. Click. The sounds of the ambubag. The whispered counting during chest compressions. The neonatologist calling for epi. The stifled cries of the nurses and doctors. “Oh God, is my baby alive?” I screamed, feeling him slipping away. Despite their best efforts, twenty-four minutes later, our beautiful boy, Maxwell James, grew his fragile wings and flew home.
What just happened? Why did God let me carry this baby for 35 weeks just to take him back? Was it my fault? Why him? Why us? Why, God?
We often talk about purpose when things go wrong. Though Max’s diagnosis was not yet known, his purpose was clear. They asked us if we wanted to donate his tissues. It was the easiest “YES” I ever said in my life. My son was a hero without even taking a breath on earth.
He came to me lovingly wrapped in a hand-knit blanket and hat. His face was swollen, his eyes squeezed shut. He had round, cherubic cheeks. His lips were red and full. His tiny pinky fingers were slightly curved, just like daddy’s. He didn’t look like he was gone — just sleeping peacefully. Our families took turns cradling him. The chaplain baptized him. The nurses took pictures. Before they took him to the OR, they gave us as much time as we wanted with him. Any time would not have been enough, but every millisecond counted and will stay etched on my heart forever.
Genetic testing confirmed a diagnosis of alpha thalassemia major (hemoglobin Bart’s), a fatal condition in which the body is unable to make functional hemoglobin, the part of blood that carries oxygen to the body. It sounds funny, but I was relieved. It meant that it wasn’t something I did or something that could’ve been prevented. Most die in utero. Max shouldn’t have made it to 35 weeks. But because he did, he saved a life with the gift of his pulmonary valve.
We buried Max in the tiniest casket on a sunny Saturday. My arms ached with emptiness. My breasts swelled with milk with no baby to feed. My entire body cried. But on that day and for several weeks afterward, we received an overwhelming outpouring of love from friends and family. I know others prayed for us because there is no way we could survive this otherwise. That “peace that surpasses understanding,” that people talk about? It’s real. Our world was flipped upside down, but we were still standing because of our faith in God, and the love and support of our family and friends.
I returned to work eight weeks later, unsure of how I would manage seeing newborns when I had just lost my own. While colleagues offered to see them, I decided I needed to jump into that pool sometime, so I dove in headfirst. And of course — one of the first patients was a baby named Max, who shared a birthday with my Maxwell. It was the first of many times I cried on my first day back. Families who remembered my pregnancy asked, “Did you have a boy or girl?” only to hear my sad story. I wasn’t sure what they’d think, or if it was even appropriate to share, but I was always met with compassion. People will surprise you when you share a little bit of yourself. I found myself empathizing with others. I spoke the language of loss. Because I broke the silence, many felt empowered to share their stories with me. When you dive in, you worry about drowning in grief, but you gain new perspective — only then can you see and feel the depth of love that surrounds you. And you keep swimming.
After the devastation of loss, we were terrified of trying again. But hope saved us from the paralysis of fear. One year later, our rainbow, Ethan James, arrived with the most beautiful cry imaginable. His name means “strong” — a reminder of our journey. Two years after that, Ellie Grace came and completed our family.
The worst moment of my life shaped me into the person I am today. I am a better wife, mother, doctor, and person after Max. He taught me everything, and everyone has a purpose, there is always room for hope, that those who sow in tears will reap in joy, and that heaven is only a heartbeat away. I still have difficult days. But I choose joy. I use my grief for good. I lean on those who helped me weather this storm. I will carry him in my heart always.
Priscilla Sarmiento-Gupana is a pediatrician. This article originally appeared in the Huffington Post.
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