It’s May – the month that we celebrate the wonderful mothers in our lives, and the time where many of us reflect on the moment at which we joined the ranks of motherhood. But one in four women experience pregnancy or infant loss (miscarriage, stillbirth, or neonatal death). That’s a staggering number of women, and yet it seems most stay silent about their experiences. We are supposed to be strong, resilient, and unbreakable. Nobody wants to hear about sad things, right? But what if we were brave enough to break the silence? Bold enough to declare, “I am still standing”? Empowered to tell the world, “My baby existed and mattered?” Allow me to share the incredible story of my firstborn, my son, Maxwell James.
In 2011, as I was nearing the end of my pediatrics residency, I saw those two pink lines on the stick that set my heart aflutter. Like so many other first-time expectant moms, I excitedly chronicled my pregnancy in a series of photos and proudly and proudly shared them on social media.
I received regular care from my OBs, took my prenatal vitamins daily, ate healthy, exercised, even forewent my beloved caffeine (as a resident working 80 hours per week, no less!) and avoided all the things I loved that were no-no’s during pregnancy. We kept baby’s sex a mystery to enjoy the thrill of finding out at delivery. I was halfway through my pregnancy when we moved back to Illinois to be close to our families. I started my new job as a pediatrician, passed my board exam, and I continued to enjoy the fluttery kicks from within my ever-expanding belly. I decorated a dreamy nursery in our new home with gray walls, a white tree, and Tiffany blue birds. My sister threw the most wonderful baby shower for us. We had everything we needed– we just needed the baby!
Thirty-five weeks in, I started having some issues that I thought were normal end-of-pregnancy symptoms. I remember crying at the bottom of my stairs because I could no longer put on my favorite boots – my feet and lower legs were so swollen. I got winded easily walking up steps. I had to quit knitting due to worsening carpal tunnel after only completing a tiny white hat. One day at work, I had to stop in the hallway and rest between patients. I felt a little dizzy and sweaty. My blood pressure was elevated. A flurry of nurses and colleagues led me to an empty patient room and made me lay on my side while I called my OB and my husband. Jay picked me up and off we went to the doctor.
I had gained 10 pounds since my last appointment, which was only five days prior. My shins pitted when you pressed them. My blood pressure was still high. I did my obligatory urine test. The OB looked at the data and quickly looked at me, saying he wasn’t impressed with what he saw, so he sent me to the lab for some more tests and said, “Just go on bed rest for the next few weeks. This is all normal.” I remember feeling that it couldn’t be normal, but I reminded myself that I’m not an OB and I should not try to be my own doctor. I trusted that he was right and knew that I could always call if something was wrong.
We went home and I lay in my bed, still dizzy from the events of the day, and mentally prepared myself for a few weeks of strict bed rest. I began to have headaches and upper abdominal pain. I gave it about 30 minutes before I knew I had to call the emergency line. By God’s grace, the doctor on the other end of the call was Dr. Julie Jensen, whom I had come to really trust over the past several weeks. I said, “I just don’t feel right. I don’t know what it is,” and without hesitation, she urged me to come to L&D immediately.
Off we went to the hospital, no hospital bag packed, none of the baby shower gifts put away, car seat not even opened. We weren’t ready if he or she was going to make their grand entrance that night. But we didn’t have a choice. It was a quiet and nervous ride in the dark, and I began to feel that mix of emotions that one gets before they are supposed to meet their baby. Will it hurt? Will he or she look like me or like Jay? Will it be as amazing as I imagine it will be? Oh my God, I’m going to be a mom! We called our parents to let them know that we were on our way in and we would let them know if they should come, too.
Not long after I had arrived, Dr. Jensen determined that I had severe pre-eclampsia. Her solemn face said more than her order: “We have to deliver you tonight. We could do a trial of labor, but I don’t think your baby will tolerate it based on what I am seeing here. The best course of action would be a c-section, but I will let you decide what you would like to do.” I turned to my worried husband, then to the monitor, where I saw my child’s heart rate dropping, then to Dr. Jensen, and said “Please do what you need to do.”
My parents and in-laws had arrived – I cried to them that I wasn’t ready yet, we didn’t even have the car seat in the car, and I was terrified of having surgery. They prayed over me, then they rolled me into the OR. I remember meeting the neonatologist en route and saying to him, “35 weeks – this should be a short NICU stay, right?” He said, “Let’s hope.”
As a pediatrician, I’ve been on the other end of this scenario many times. But absolutely nothing prepares you to be on the other side of that blue partition when things go wrong. You can’t see anything or feel anything, but you can hear it all, and the silence in that moment was deafening. I didn’t hear any crying. Why wasn’t my baby crying? NO. My heart sank. “What is happening? Is it a boy or girl?” “There is something wrong but we don’t know what yet, he is very swollen.” Click. Click. The sounds of the ambubag. The whispered counting during chest compressions. The neo calling for epi. The stifled cries of the nurses and doctors. “Is my baby alive? Oh God, is my baby alive?” I screamed because I already felt him slipping away. “We are doing everything we can for him!” I heard them say. But 24 minutes later, our Maxwell James, the beautiful boy we waited so long for, grew his fragile wings and flew home.
Unless you have experienced the unimaginable, you will never know what it feels like to have your heart ripped out of your body.
What just happened? Why did God let me carry this baby for 35 weeks just to take him back? Was it something I did? Is this real? Is this a nightmare? God, why? Why him? Why us? Why me?
Part of the answer came quickly – while we still didn’t have a diagnosis for Max, his purpose was clear when they asked us if we would be willing to donate his tissues (corneas and heart valves). You would think in our state of grief we would be unable to process this information, but it was the easiest “YES” I ever said in my life. I hadn’t even realized that premature infants could be considered for organ/tissue donation. But here was my son—a hero without even taking a breath on this earth.
He was brought to me lovingly wrapped in a hand-knit blanket and hat. They dressed him in a blue hand-sewn gown. He smelled of fresh baby soap. I studied him. His face was so swollen, his eyes were squeezed shut. He had round, pink, cherubic cheeks. His lips were red and full. His tiny pinky fingers were slightly curved, just like his daddy’s. He didn’t look like he was gone – just sleeping peacefully. Our parents and siblings (who came as soon as they heard), faces wet with tears, all took turns cradling his tiny body. The chaplain came in and baptized him. The nurses took pictures for us to keep. They gave us as much time as we wanted with him. I don’t remember how long we had him, but it doesn’t matter – any time would not have been enough, but every millisecond of that time counted and will stay etched on my heart for my whole life.
When we were ready to let go, they gently took him from me and rolled him away to the OR, where they would harvest his heart valves and corneas. During that time, I was on the phone with Gift of Hope, so they could ask me all of the standard questions required of the family of an organ/tissue donor. I was so heavy with grief and pain medication that my sister had to hold the phone up to my ear. What started off as typical demographic questions turned into the absurd. “Did your son drink alcohol?” “No.” “Did your son smoke?” “NO – are you serious? He never took a breath on his own.” I felt the anger rise inside of me. Why are they asking me these questions? I knew she was just doing her job and reading off the form, but I couldn’t help but feel this was a cruel joke.
When the phone call was finished, a nurse dropped off a basket filled with food and a fuzzy blanket. I didn’t know who it was from, but I was so exhausted. Jay moved his recliner to be next to my hospital bed, we covered ourselves with the blanket, and we wept together until we fell asleep. A nurse came in to check my vitals, and she said, “Oh, you got one of Kyle’s blankets, how beautiful!” I looked at the blanket and just then noticed the beautiful embroidery that said “Forever in Our Hearts” in the corner. That night, I met Jill Zuleg, a nurse who uniquely understood my grief.
She sat on the side of my hospital bed, held my hands, and told me the story of her beautiful 16-year-old boy, Kyle, and how he tragically lost his life one year prior when a tree branch fell on top of him from 40 feet above during a game of flashlight tag in the woods. Unimaginable heartbreak turned into healing when Kyle became an organ donor—his gift of seven organs gave five other people a second chance at life. Jill told me that while Kyle was in the OR for organ harvest, though her grief consumed her, she was acutely aware of the tangible things she needed at that moment, which were warmth and nourishment. She made it her mission to supply these needs to families who were experiencing the same thing. Her foundation, Kyle Shines On, makes it possible for her to gift blankets and baskets of food to donor families all over the state of Illinois. We cried together over our losses, but found strength in one another. I was grateful, not only for the gifts, but also to see that despite the tragedy in her life, she was still standing. I was somehow going to get through this.
We didn’t know what took Maxwell’s life until six days after I delivered him, which was also the day I was discharged. The doctors had suspected, but finally confirmed after genetic testing, that our son had alpha thalassemia major (Hemoglobin Bart’s), a disease in which the affected individual is unable to make any functional hemoglobin to carry oxygen to the body. Max’s anemia was so severe that his hemoglobin was 0 on his blood tests. We found out that Jay and I were carriers for the condition (alpha thalassemia trait). It sounds funny, but after hearing this, I was relieved. It meant that it wasn’t something I did, it wasn’t something that would have been caught unless invasive and specific genetic testing was pursued, and it wasn’t something that could’ve been prevented. Most babies with this condition die in utero. Max shouldn’t have made it to 35 weeks. But because he did, he was able to save someone else’s life.
He was born to be a hero.
We buried our beautiful boy in the tiniest white casket on a sunny Saturday morning after a meaningful memorial service at our church. I wailed over his lifeless body and had to be helped with sitting and standing, as I was still recovering from surgery as well as the pneumonia that was detected three days postpartum. Much of that day was a blur, but I still remember the love in that room and the immense support I felt from family and friends.
For several weeks, we received an overwhelming outpouring of love from our family and friends. I’ve kept each and every card I received during that time and still pull them out to read every once in a while. I know people were praying for us because there is no way anyone could survive this otherwise.
That “Peace that surpasses understanding,” that people talk about? It’s real. Our world was completely flipped upside down, but somehow, 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 was going to manage caring for newborns when I had just lost my own. My sweet colleagues offered to see all of the newborns for me for as long as I needed, but I decided I needed to jump into that pool at some point, so why not now? I dove in headfirst. And wouldn’t you know it – one of my first patients I got to see was a baby named Max, who shared a birthday with my Maxwell. It was the first of many times I would cry on my first day back to work. Many of my patients and their parents remembered my giant pregnant belly only 2 months before, and several enthusiastically asked, “Did you have a boy or girl?” only to be met with a truncated version of the story above. I wasn’t sure how the news would be received, or if it was even appropriate to share such a personal story with my patients and their families, but ultimately, I was always met with a look of concern, compassion, and love. People will surprise you when you share a little bit of yourself. I found myself being able to empathize with others who were going through challenging times. When you dive in, you worry you might drown in your grief, but the truth is, you gain new perspective – only then can you see and feel the depth of love that surrounds you. And you keep swimming.
One year after we lost Max, we moved to a new home, and shortly after, our rainbow came—Ethan James arrived with the most beautiful cry I had ever heard in my life. His name means “strong,” which I think best described our journey to parenthood the second time around. We experienced the pain of an early miscarriage the following year. Fearful of yet another loss, we were not sure if we would have any more children, but then our Ellie Grace arrived, pink and perfect. Both babies were tested for alpha thalassemia major while in utero at 11 weeks. Ethan was found to be a carrier, and Ellie does not have the gene!
(above: my rainbow babies; photo cred. Sheila Barabad)
(above: my family– the bear in Ethan’s hands belonged to our Max; photo cred. Sheila Barabad).
Ultimately, the worst moment of my life shaped me into the person I am today. I am a better wife, mother, doctor, and person after having loved and lost Max. He taught me that everyone and everything has a purpose, that God keeps his promises, that those who sow in tears will reap in joy, and that heaven is only a heartbeat away. I still have days where the heaviness of loss is so great in my heart that I feel I can’t breathe. But every day, I choose joy. I choose to use my grief for good. I lean on the people who have helped me weather this storm. I will carry him in my heart always. And I will continue to praise Him who chose me to carry him.
To those who are hurting this Mother’s Day – if you are an angel mom and have doubted that you can even be called a mother, if you have struggled with miscarriage or infertility but have the heart of a mother, or even if you have lost your own mother and are wishing for just one more hug or to hear her voice – I send you love and light today. You are not alone. Happy Mother’s Day!
(above – cookies I baked for a fellow angel mama )
Dr. Priscilla G.
Sarmie Sister Sweets