‘Whose life do I prioritize?’ A choice no parent wants to make

When an obstetrician or midwife cuts the umbilical cord after a child is born, the room is filled with tense silence until the baby’s first cry is heard.

I once heard this silence in an operating room where 32 people were bustling around, all awaiting the birth of a baby with a massive growth covering her neck and jaw that might make it difficult — if not impossible — for her to breathe on her own.

As a pediatric otolaryngologist, I was there to help her breathe. My memories of that day, and her mother’s difficult choices about whose health to prioritize, have re-emerged as I think about challenges parents and clinicians now face as they talk about difficult decisions in a post-Roe world.

The baby’s parents, Jessica and Paul, had known this day would come. A routine prenatal ultrasound, when Jessica was 22 weeks pregnant, revealed signs of a complication that would make for a very difficult birth, one requiring a difficult and possibly hazardous C-section on the mother’s part and a potentially life-threatening problem for the child. At that moment, the couple had a choice about carrying the child to term and decided to do that, come what may. They had simply hoped it would come a few weeks later, when the plan we had developed together could better unfold. But now we were all doing the best we could.

In the operating room, the silence stretched on as the obstetrician cut the cord and handed me the newborn, covered with amniotic fluid tinged red from a cesarean birth. One of the nurses gently cleaned the baby while I and the neonatal intensive care unit team inspected her. The mass I had seen on an MRI, which had brought so many medical professionals to this room, appeared even larger in real life. The baseball-sized teratoma, an uncontrolled growth of skin, muscle, bone, and other tissues, obscured the baby’s neck and jaw line. She struggled to draw in a breath, but there was no path in her neck through which air could reach her lungs. Her chest heaved with increased effort, but to no avail.

Nearly two decades ago, surgeons first described the ex utero intrapartum treatment, or EXIT for short. This procedure is designed for treating a newborn with a mass obstructing its mouth, neck, or chest that would make it difficult or impossible for the baby to breathe on its own once the umbilical cord had been cut. In an EXIT procedure, an obstetrician performs a partial cesarean birth, keeping the baby attached to the umbilical cord until a pediatric airway surgeon can safely place a breathing tube in the newborn’s mouth or surgically make a hole in the neck to place a different form of breathing tube — a tracheostomy tube — to bypass the obstruction. Once that has been accomplished, the baby can be fully delivered and the umbilical cord cut.

In this procedure, the mother temporarily becomes a heart-lung machine for the partially born child. If this seems the stuff of science fiction, welcome to the world of modern-day medicine.

While the EXIT procedure holds the promise of providing a medical miracle, it is also fraught with risk and entwined with ethical conundrums.

In a routine cesarean section, the anesthesiologist gives medicine to constrict the blood supply to the uterus just before the incision is made into it to deliver the baby. That medicine significantly lowers the risk of maternal bleeding and death during the procedure. In an EXIT procedure, though, the mother decides with the team to prioritize the baby’s health, so instead of constricting blood flow, the anesthesiologist delivers medicine to keep oxygen-rich blood flowing briskly to the uterus, through the placenta, down the umbilical cord, and into the baby, keeping the baby alive.

“Whose life do I prioritize?” is a difficult decision no parent ever wishes to make.

I write this having worked as a physician for years before the Supreme Court’s Dobbs vs. Jackson Women’s Health Organization decision removed federally protected access to abortion, and in a state where abortion remains legal. As difficult as these decisions are in my hospital, I am aware of how much more charged they will be in states where a fetal ultrasound may identify an abnormality and the mother may not be able to choose whether or not to carry the child to term, where she will no longer have the opportunity to weigh her own risks and benefits with those of her unborn child.

Jessica and Paul were aligned in their desire to move forward with the pregnancy in hopes that an EXIT procedure would help their daughter survive. They had made that choice at 22 weeks, when they decided to carry on with the pregnancy, a decision that is now even more complicated in many states. They understood Jessica’s increased risks, but felt they needed to do everything in their power to save their child.

Given the size of the teratoma, we made the decision to wait until the fetus was either 32 weeks old or weighed 2 kilograms, as that would allow for the even more dramatic possibility of placing the baby on a cardiac bypass machine if I could not secure an airway. But those milestones were never reached: Jessica went into preterm labor at 29 weeks.

Another set of decisions needed to be made, and quickly. An EXIT procedure in a woman who is contracting is even more risky for the mother, due to the risk of increased bleeding, and the outcome for the child is less predictable, as the placenta may not remain fully attached to the uterus for long enough for oxygen to flow freely while the EXIT is carried out. The medical team’s recommendation was to perform a standard cesarean section to deliver the baby and then do our best to secure a safe airway for it. Jessica tearfully agreed with this choice. I heard the guilt in her voice, and sensed her feeling that she was prioritizing her risk and her life over her child’s.

I felt then, as I often do, the unfairness when parents are forced to make such terrible decisions. I reiterated to Jessica that, from a medical standpoint, her decision was sound and that her medical team supported it. That was how I came to be looking down on a newborn with a mass obstructing her neck, her eyes closed, and her chest heaving.

I opened her mouth and used an instrument called a laryngoscope to see her vocal cords, hoping I could place a breathing tube through them. The teratoma had pushed the cords far to the left, but at least I could see them. The breathing tube, though, would not go through them; it was as if there was no air pipe below. As I tried again, one of the obstetrical nurses whispered in my ear that I should try for as long as I felt necessary, but that if the infant girl was not going to live, then it was very important to let her mother hold her while she was still pink. I was taken aback by this brutal candor, which could only come from someone immersed in a field such as high-risk obstetrics, where death was so much a part of life.

I asked an assistant to lift up the girl’s chin to extend her neck as much as possible, then used a scalpel to cut through the skin below the mass in a long vertical line to get down to her air pipe. But it was nowhere to be found. I put my fingers in her neck to feel, and felt right down to her spine. Nothing. Perhaps the teratoma had prevented her airway from developing.

The nurse was in my ear again. “If she isn’t going to make it, we need to get her over to her mother, but clean,” she whispered urgently. I knew I had to stop, and immediately began stitching up the baby’s neck. The nurse cleaned her, put a woven cap on her head, and swaddled her in a clean blanket in such short order that, just as I was cutting the last suture, she lifted the child from the bed, made sure that one tiny, still-pink hand was visible, and brought her to her mother.

Twice in just a few weeks, Jessica had needed to make a choice between two lives: hers and her unborn child’s. At first, she chose to risk herself for the sake of her child. As part of her medical team, I supported and fully endorsed her decision. Then everything shifted when the baby arrived early. The set of risks had changed, and Jessica was forced to choose again. This time, she chose to prioritize herself.

None of us could have known then what we know now, that she would give birth to a child anatomically incapable of life. The great majority of time, doctors and patients simply don’t get such information when we are in the moment and making real-time decisions. Without a clear-cut answer, Jessica had to trust her inner voice, and her medical team needed to support her choice, even if it ran counter to the one that had been recommended.

Not long ago, I met with a mother and her partner to discuss an EXIT procedure, the options and the risks, and how they wanted to proceed. She was crystal clear: “I know some mothers might choose differently and I respect that. I am just not them. I have a two-year-old child home who needs me too. I want to try to save my baby, and want to try this EXIT procedure. Please do all you can. But if something goes wrong and if choices have to be made during the operation, I choose me.”

EXIT procedures may be rare, but the critical decisions that people and their doctors make together are not. As a pediatric surgeon, I see my “patients” both as the children I treat and their parents. But other than in EXIT procedures, I rarely have to engage in discussions of “Whose life should be prioritized?” and “Whose life should be put at risk?” where the primal choice to be made is between mother and child.

Through caring for Jessica and working with her through her choices, one of them in the face of crisis, I was given a window into what has today become an even more constrained environment for making choices about the lives of mothers and babies. In some states, a mother could have an ultrasound showing that something is terribly wrong with her baby and, no matter how painful and difficult the next set of decisions might be, will not have a say in them.

I hope voices like Jessica’s are never silenced, but forever find a way to be heard, even in states where it has become difficult to legally engage in these kinds of patient-focused discussions and decisions.

Christopher Hartnick is an otolaryngologist; director of pediatric otolaryngology and director of the Pediatric Airway, Voice and Swallowing Center at Mass Eye and Ear in Boston; and a professor of otolaryngology–head and neck surgery at Harvard Medical School. This essay reflects the author’s present recollections of experiences over time. Some names and characteristics such as age and sex have been changed to anonymize the characters, and some events have been compressed.