Mila lay on my ultrasound table, her tan skin stretched over a twenty-two-week pregnant belly. Across the room, Joaquín, Mila’s husband, rested his elbows on his knees. I had graduated from a High-Risk Obstetrics fellowship seven months earlier and was serving as a military physician, and Joaquín was a Marine. His thick, defined arms, broad shoulders, and narrow waist offset a short stature—his presence was conspicuous. Yet when he smiled, his eyes disappeared behind full cheeks, giving him an air of youth and kindness.
Their five-year-old son, James, slouched on the chair next to Joaquín, watching Dora the Explorer on an iPad.
“Hi, buddy,” I said.
When he did not answer, Joaquín tickled his side. The little boy laughed but kept his eyes on Dora.
I squeezed a tube of blue ultrasound gel onto Mila’s abdomen, then swept the probe over her skin, careful to avoid her plain blue T-shirt and jeans. The three of us engaged in banal chitchat. “Do you know the sex of your baby?” “Have you picked a name?” “The weather is nice for January.”
Though I had not met the couple before, I knew from Mila’s chart that their baby had a lung tumor. But I also knew it had been stable for a few weeks. The purpose of this visit was to make sure the fetus was not getting sick, that everything was status quo. But it wasn’t.
Images of the little girl they had already named Williamina appeared on the monitor. I pointed out their daughter’s head, arms, legs, feet, hands, fingers, toes, nose, lips, and spine as she wiggled, stretched, and turned inside Mila’s body. Though the couple marveled at the images, they could sense I was worried and they could see why. The baby’s lungs, intestines, stomach, heart, and liver floated in a sea of black. Over the last week, fluid had accumulated in her thorax and abdomen while a white mass—a tumor—filled the left half of her chest. Their daughter’s body was failing.
The tumor Williamina had is called a congenital pulmonary airway malformation (CPAM). Often, these masses are small and of little consequence to a fetus. But when one grows as large as Williamina’s, it compresses the heart as well as the tributaries of arteries and veins that course through the chest. Consequently, her blood failed to circulate and the pressure of stagnant fluid inside her vessels forced water to leak into all of her tissues. The medical term for this condition is fetal hydrops, and it is an ominous sign.
Mila and Joaquín already knew about the CPAM. They already knew their daughter could get sick before she was born. They already knew the mass was potentially large enough to crowd her lung tissue and impede its normal growth, so that even if she survived in utero, the little girl could die of respiratory failure at birth.
What they didn’t know was that I had three children, and their family reminded me of my own.
I had just returned from maternity leave. Like Mila, I’d recently lain on an exam table watching my baby on an ultrasound screen. It was easy to see myself in Mila and my baby in Wil-liamina. But I also saw my four-year-old in James. They both had dark hair, tan skin, and a shy demeanor. Though new, our connection—their reflection of me—meant I did not want to tell them how hydrops portended a bad prognosis, how their baby’s body was starting to fail, and how I had little to offer.
Mila swung her legs to the side of the bed, sat up, and pulled the bottom of her T-shirt over her belly. Joaquín walked to her side and rested his hand on her knee, then asked, “What’s the plan, doc?”
When I was in training, I had seen babies like Williamina. I’d counseled families about the gravity of this situation. I was certain that Williamina was sick and gravely so. But I did not know what would happen to her: if she would die before birth, if she would die after birth, or if she would survive and have surgery. I did not want to be responsible for all the uncertainty such a tumor introduces to a family. And yet, like most families, Joaquín and Mila wanted me to make predictions about their daughter so they could make decisions. Should they terminate the pregnancy? Should they buy a crib? What about a baby shower? Should they plan for a funeral?
The simple truth was, I didn’t know.
I quoted studies, recited odds, shared my experiences with other babies like Williamina. But they wanted black-and-white. Hell, I wanted black-and-white. However, my expertise did not afford me the ability to make predictions. Rather, my training helped me set expectations, temper Mila and Joaquín’s hope. But first I had to temper my own, and I did not want to; I wanted to believe it would be okay.
So I told the couple I’d read studies where doctors gave a mother two steroid injections over the course of two days and masses like Williamina’s shrunk. Then their babies got better. At that time, the treatment was new and not standard of care.
“I want to do it,” Mila said.
But Joaquín did not share her enthusiasm. “Are steroids dangerous for my wife?” He was not willing to sacrifice his wife’s health, even to save his unborn daughter.
I knew that the medication was safe, with few side effects: it’s something we administer frequently in pregnancies, for other indications. I did not know if it would help Williamina.
While the data were not in Wil-liamina’s favor, the couple would have trusted anything I told them, followed any advice I offered. Joaquín picked up James and the little boy wrapped his arms around Joaquín’s neck. I thought about my family and how I would feel if my doctor had said my baby was critically ill and the only treatment available offered little hope. For me, that would be an unbearable reality.
So I said, “I think this will work.”
I lied. I did not think it would work. Yet hope was what I knew they wanted to hear, and so it was what I wanted to provide. Maybe I thought I could will what the couple wished for Williamina —what I wished for Williamina—with optimism. Or maybe I just kicked the proverbial can.
Over the next two days, Mila came to the clinic and our nurse gave her the two steroid injections. A week later, she and Joaquín returned for another ultrasound, one that would show whether the medications I’d prescribed had shrunken the CPAM.
When the nurse told me that Mila was in the ultrasound room, I stayed in my office returning emails. I did not want to see the family. I wanted someone else to do the ultrasound. I’d pushed off the sad news until this point, and now I knew I had to confront Mila and Joaquín’s pain. If Williamina’s condition had not changed—and it likely had not—I desperately wanted someone else to tell them.
I walked down the hall, knocked on the exam room door, opened it, smiled, and greeted the couple. This time, James raised his right hand and waved.
“You are back,” I said to James. “I am glad to see you.”
I patted the ultrasound table and said to Mila, “Hop on up.” I was over-compensating for my anxiety with a cheerful and light tone.
As Mila lay down and lifted her T-shirt, James climbed into his father’s lap.
Images of Williamina appeared on the screen, and it was obvious the mass was unchanged and the fluid remained. In fact, there was more fluid—the hydrops was worse. I put the probe down and turned toward Mila. She saw the images. She knew.
“Sometimes CPAMs can get smaller on their own,” I said.
“So, we just wait?” Joaquín asked. “There is nothing left to do?”
A week later, fluid had not only accumulated inside Williamina’s body but also around her. When a baby develops hydrops, water does not just accumulate inside the baby but outside of her too. Furthermore, the mass pushed on Williamina’s esophagus so that she could not swallow. When a fetus is healthy, amniotic fluid is made by the baby and cleared from the uterus when the baby swallows. But Mila’s baby girl could not clear the fluid, so it collected inside Mila’s uterus, forcing the muscle to stretch. Once the organ grew to the size of a full-term pregnancy, she went into labor.
But Williamina needed more time to gestate. Her lungs needed more time to develop. Her body was already stressed. If she delivered at twenty-four weeks, she would die.
Mila’s contractions would not stop unless her uterus was smaller, and even then she might continue to labor. I explained I could insert a needle into her skin, through her uterus, and drain some of the fluid so the muscle would relax, a procedure called an amnio-reduction.
Even after I listed all the risks, including infection, bleeding, progression of her labor, injury to the baby, and breaking her bag of water, Mila told me to do it.
“It sounds dangerous,” Joaquín said.
“I would not suggest the procedure if it were dangerous,” I said. “It will work.”
Again, I sounded more confident than I felt, more confident than I knew I should be in that moment.
I prepped the exam room and gathered all of the supplies. Mila’s cervix was already dilated. The bag of water surrounding Williamina was tense and tenuous, like a balloon stretched beyond capacity. Mila’s body was small and her large uterus filled her abdomen, pushing on her diaphragm so that her lungs could not expand. Lying back, she had trouble breathing.
I used a sponge to spread Betadine, a brown disinfectant, over her abdomen, making concentric rings. Using an ultrasound, I found a pocket of fluid free from Williamina’s head, face, limbs, and umbilical cord, then pushed a three-inch needle through Mila’s skin and watched it on the ultrasound as it entered her uterus. Then I connected tubing that led to a large container, and the straw-colored amniotic fluid flowed out of her abdomen. When I was done, I’d removed two liters. At that point she stopped contracting.
The couple went home, only to return a week later with the same problem. Again I drained two liters of fluid from Mila’s uterus. But now she was twenty-five weeks pregnant, a gestational age some babies can survive if they deliver. Though it was unlikely Williamina could live outside Mila’s body, Mila and Joaquín said if Williamina delivered, they wanted the pediatricians to try to keep her alive.
Even though I had drained liters of fluid from Mila’s uterus, an excessive amount remained. Consequently, the baby floated and flipped, putting her umbilical cord at risk. If Mila’s water broke, the cord could slip through her dilated cervix in front of Williamina, and her body would compress the blood vessels that kept her alive, requiring an emergency Cesarean delivery.
I admitted Mila to the hospital so that I could quickly get her to the operating room if her water were to break and the umbilical cord prolapse. Every few days, I put a needle into Mila’s abdomen to drain amniotic fluid. Joaquín wanted to be there for every procedure. So on the days I preformed the amnioreduction, I waited for him to retrieve James from daycare and then come to the hospital. Often he’d still be in uniform, his khaki shirt neatly tucked into blue pants with a vertical red stripe. Rows of military ribbons were meticulously pinned above his left breast pocket. He had perfect military bearing.
The procedure took at least thirty minutes. During that time, I talked with James about his cartoons and toys. My son loved the same characters, shows, and animals: Lightning McQueen, Little Einsteins, and Blues Clues. Joaquín, Mila, and I laughed about the perils of parenting and the funny things James would say. When the procedure was done, I would linger in their room to continue our conversations. Soon, they started to inquire about my children. The roles of doctor and patient were blurring into friendship, further complicating the balance between the reality of Williamina’s condition and my hope.
I never told them that everything we were doing was a desperate measure to keep their baby girl alive. I never said I did not know if it would work. They understood their daughter was sick, but I don’t know if they understood how sick.
Sometimes, in extreme cases, with the right patient and the right type of CPAM, surgery can be done on the fetus while it remains inside the mother’s uterus. Mila had read about this option. I knew Mila was not a candidate for fetal surgery, but I did not want to be the one to say no to her. So I called a surgeon in San Francisco. He confirmed what I already knew, but I wanted him—anyone else but me—to be the one to say there was nothing to be done. And he did.
Three weeks after I admitted Mila to the hospital, twenty-eight weeks into her pregnancy, my pager woke me at five a.m. Her water had broken. On the phone, one of the obstetrics residents explained that a loop of Williamina’s umbilical cord had slipped into Mila’s vagina, cutting off the little girl’s circulation, so the on-call obstetrics team had performed an emergency Cesarean delivery. A pediatric surgeon was already operating on the baby.
“I’m on my way,” I said.
I put on clothes, kissed my three sleeping children goodbye, got into my car, and sped down the highway in the dark. I shared the roads with only a few morning commuters. Though the hospital was not far from my house, the drive felt long. Looking back, I don’t know why I rushed. I was not the one who would operate on Williamina. Mila was stable after the delivery. At that point, I had no role. My presence was superfluous. But my connection to this family, my deep reverence for their story, compelled me to be present.
I parked, ran though the hospital’s double doors, and did not bother to change into scrubs or a uniform. I climbed the stairs two at a time, ran through a windowed hallway and onto Labor and Delivery. A resident sat at her work station in the middle of the unit. When she saw me, the first thing she said was “I’m sorry, Dr. Lee, the baby died.”
The mass had taken up too much space in Williamina’s chest. There was not enough lung tissue left for her to breathe. I sat down at the nurses’ station, rested my head on the back of the chair, gazed at the ceiling, and said, “Fuck.”
After I changed into my scrubs, I told the resident team on the ward I’d round with them later in the day, and went to Mila’s room. I sat on the bed and said I was sorry; then I cried. I told them I was glad we tried but I was so sorry. Joaquín said his daughter fought to stay alive. He said she had her fists in the air when he got to hold her and she was strong. Mila told me she was beautiful. Their peace was staggering. They told me it was okay. They were okay.
But I was not okay.
I don’t know how long I stayed in their room. An hour? Three minutes? Time disappeared. When I finally left them, I went to the NICU and asked if I could see Williamina. A nurse led me into an alcove where the baby lay on a small bed. Mila and Joaquín had dressed her in a white gown embroidered with flowers. She had dark thick hair like James. Her fingers were long and her eyes closed. She was gorgeous.
Mary, a social worker I had known since I’d started my job at the military command, was taking pictures of Williamina for Mila and Joaquín—a standard practice at our hospital when a baby dies at birth. She had dealt with the death of babies for decades, much longer than I had practiced medicine. She hugged me while I cried until my chest hurt.
“You will never survive like this, Whitney,” she said. “You are too attached.”
She was right, and I have thought a lot about her words over the years. But when I took care of Mila, I did not like the doctor I would become if I were less attached. I still don’t. I have not learned to find both deep compassion and emotional distance in the same space. A decade later, I’ve not reconciled what that reality means for my heart or my job, but I suspect this tug-of-war will eventually end my career as a physician.
I chose to attend Williamina’s funeral. I drove two hours north of where I lived, through mountains, creosote bush, cholla, and windmill farms to a small church in the Mojave Desert. The service had already started when I crept into the back and sat alone in a pew away from the rest of the congregation. The dry air smelled like wood and stone. Joaquín was telling his friends and family about the strength his daughter displayed in the few hours she lived. He expressed the pride he possessed as a father. Then he saw me in the back of the church. He pointed at me, put his other hand on his heart, and began to cry.
When the service ended, I stood at the end of the line to pay respects to Williamina and to hug Joaquín and Mila. I don’t remember if Joaquín was in uniform or what Mila wore. But I remember I did not want to see the baby’s body. I don’t like seeing dead babies. I was present with her when she was vibrant and alive inside Mila’s body. I was present immediately after she died. I did not need to see her dead in a tiny casket. I embraced the couple, who thanked me for coming. “We started this together and we will move on together,” I said.
At the time, I did not know what I meant by this comment. It felt like a good placeholder, a door open to hope. I was not willing to say goodbye or acknowledge I might never see them again.
The next week, Joaquín deployed to Afghanistan.
Two years later, still in San Diego, I knock on a door behind which Joaquín and Mila are waiting. I noticed Mila’s name on my clinic schedule early in the day, and the hours leading up to her appointment felt long and arduous.
When I enter the exam room, both Mila and Joaquín stand to hug me. An ultrasound taken earlier in the day confirmed she is eight weeks pregnant. I congratulate them and we laugh as we embrace. Mila smells like laundry. Joaquín still has impeccable military bearing. Like old friends, we catch up on life events and share stories about our children.
Then Joaquín sits and says he has something for me. He reaches into a bag and pulls out a folded flag with a certificate stating that it was flown on October 16th in my honor by the Marine Light Attach Helicopter Squadron 267. He explains that after a rough day in Afghanistan, he asked that they fly the flag in my name. It is humbling to accept such a gift, one I am not certain I deserve.
“I would really love it if you would be my doctor this pregnancy,” Mila says.
My favorite patients are the ones who allow me to walk with them through a pregnancy that follows the loss of a child. Those pregnancies are long. Each office visit, ultrasound, and test carries the weight of the loss they have already suffered. That heaviness is part of Mila’s pregnancy, too. I want to absorb her fear and worry, but it is not mine to own or fully understand. Yet Mila, Joaquín, and I walk together—each milestone normal and reassuring. First, she has normal genetic testing. Eight weeks later, a normal ultrasound. Then there is normal fetal growth and normal amniotic fluid. Every piece of information we have tells us Mila and her baby are well and healthy. But there is always something that could go wrong; every day of every pregnancy is an opportunity for devastation. Though I do not think about such morbidity during most pregnancies, I harbor an irrational fear about Mila’s that I keep secret.
After eight months of anxiety and anticipation pass, I stand in an operating room wearing a surgical gown, mask, goggles, and gloves. Mila is on the OR table and Joaquín is sitting on a stool by her side. A resident and I have already covered her body with a sterile blue drape, positioned suction, and tested our surgical cautery. A gold locket that contains a clipping of Williamina’s hair hangs around Mila’s neck.
As in most Cesarean sections, Mila is on the table awake. But when Williamina was born, she was asleep—there was not time for spinal anesthesia or an epidural. So this experience is new, and she is nervous. Admittedly, so am I. We still have not crossed the finish line. My brain knows everything is fine. But my heart is terrified of the devastation that would ensue if anything went wrong during the surgery, if this baby had an anomaly I missed, or if for some reason I cannot anticipate she were to die.
I pull a scalpel over Mila’s skin, slicing through the scar left from Williamina’s birth. Though I am anxious to deliver this baby, the resident and I take our time to get into Mila’s abdomen. Careful and meticulous, we cauterize bleeding blood vessels, and we are cautious of scarring that may have formed inside her abdomen as a result of the last C-section. We take nothing for granted.
Just before I incise Mila’s uterus, I announce, “She is almost here.”
When I cut into the uterine muscle, clear amniotic fluid gushes from the incision spilling over Mila’s flanks. I reach into her pelvis and wrap my hand around her daughter’s head. I am anxious to hear the baby cry. We are so close to the end and I just want to hear her cry. I deliver the little girl’s head, then her shoulders, belly, and legs. For a moment, lying in front of me, she is quiet and still and it is awful. A thousand “what ifs” run through my mind. What if I took too long to deliver her? What if I hurt her during the delivery? What if she cannot transition into the outside world? But after the pause—seconds that feel like centuries—the baby girl wakes to the world and wails. I gather her in my arms and the anesthesiologist pulls down the drape that separates me from Mila and Joaquín so that I can hold up their daughter for them to see.
Though the baby is screaming and squirming, Mila looks terrified.
“Is she okay?” Mila asks, gripping Joaquín’s arm.
“Mila,” I say. “She is perfect.”
Whitney Lee is a maternal fetal medicine physician, an assistant professor of obstetrics and gynecology at Northwestern University, and the recipient of an Illinois Arts Council Agency Literary Award.
