At the beginning of the pandemic, a woman I know well—I’ll call her Jackie—became pregnant at age 30. Jackie has a mild intellectual disability, but she is high functioning, verbal, and able to make her own medical decisions—which was recognized legally by the court in her county when she was younger. Jackie began prenatal care in her second trimester, care that had been delayed due to the lockdowns in our state in March 2020. After talking with friends and family who are mothers and watching birth videos online, she said that she wanted a waterbirth at home.
Unfortunately, Jackie had a high-risk pregnancy. She began to experience pregnancy complications, including petit-mal seizures and elevated blood pressure. She was diagnosed by an obstetrician/gynecologist with preeclampsia. Jackie also began to experience strong contractions several weeks before her due date, and these episodes of preterm labor led to concern that she would deliver her baby prematurely.
Jackie’s doctor could not determine her due date with precision because it had been estimated from a late ultrasound, and Jackie’s recollection of her last menstrual period was not considered reliable. Nevertheless, when it was estimated that the pregnancy was at 37 weeks, the doctor decided to induce labor after Jackie reported having yet another seizure and protein was found in her urine.
Jackie’s Induction of Labor
The medical induction of Jackie’s labor proceeded with the usual cascade of interventions. Jackie originally refused an epidural, due to her fears that the procedure would damage her low back (which she had previously injured). Yet after several hours of painful contractions with painkillers administered only via IM injections, she agreed to the administration of epidural anesthesia. Then something went wrong.
The anesthesiologist came into Jackie’s hospital room when the Ob/Gyn was not present. She began to give Jackie instructions to prepare for the placement of the epidural. She did not appear to be familiar with the documented medical conditions in Jackie’s chart because when Jackie began to have a petit-mal seizure in front of her, she failed to recognize the symptoms: being suddenly very still, fluttering eyelids, and trembling hands, and then returning to alertness afterwards but with evidence of fatigue. Instead of recognizing these symptoms, she interpreted Jackie’s behavior as defiance and lack of cooperation with her instructions—as if Jackie had been mocking her with her behavior. Consequently, she left the room to consult with the Ob/Gyn. When they returned, they decided that Jackie would undergo an emergency c-section under general anesthesia. A c-section was one of Jackie’s biggest fears.
As it happened, Jackie’s baby had already descended far down into the pelvis, but Jackie was not checked before she was wheeled down the hall to surgery. In the operating room, after making the abdominal incision, the doctor had to call for assistance from another medical provider because the baby’s head was crowning in the vagina. One of them pushed the baby’s head back up the birth canal and the other struggled to deliver the baby through the cesarean cut, and they eventually got him out. Jackie had a massive postpartum hemorrhage, but the doctor chose not to document the amount of blood that she lost. Jackie did not receive a blood transfusion.
Meanwhile, the baby’s skull bones had already molded, and the difficult process of delivering him in the reverse direction of his downward trajectory was not easy on him. His Apgars were not documented, and he was not given assistance to breathe. He was, however, placed in NICU for observation. The next day, upon examination, his neonatal pediatrician diagnosed him with a cephalohematoma. He was not assessed for subdural hematoma at the time. However, he was later diagnosed with vision problems. The impairment of his vision—including tendency to cross-eye (strabismus) and both eyes turning inward (esotropia), resulting in difficulty seeing—was evidence that there had been damage to his occipital lobe, the part of the baby’s brain that is responsible for vision.
Risks of Medical Induction of Labor
Induction of labor in first-time mothers at 37 weeks has a statistically higher likelihood of resulting in cesarean. This fact has been demonstrated in many studies (Goer and Romano), and the procedure has been criticized for the risks that it poses to mothers and babies (Block 2008; Goer 1995; and Wagner 2008). These risks include low heart rate (fetal), infection (fetal and maternal), uterine rupture, uterine removal, and uterine atony leading to postpartum hemorrhage (Mayo Clinic)—and, of course, cesarean section, a major abdominal surgery that comes with a host of its own risks to mother and baby. So-called “failed inductions of labor” constitute 25% (Mayo Clinic) or more of all inductions of primiparous women. A first-time mother has an overall one in four chance of c-section delivery if she is induced. The earlier in her pregnancy that she is induced, the more likely it is that the induction will fail.
Induction continues to be widely implemented for a variety of reasons, including as a treatment for preeclampsia and eclampsia. Delivery of the baby does not always resolve symptoms of high blood pressure, proteinuria, and seizures immediately, however. Many mothers continue to have the symptoms after delivery that only gradually resolve—or do not resolve, as I have seen myself when serving in a maternity clinic in the Philippines. Mothers can die from an eclamptic seizure in the postpartum period.
In Jackie’s case, she faced multiple physical risks during her pregnancy, delivery, and postpartum period due to her health conditions. Her preeclampsia/eclampsia diagnosis led her doctor to follow ACOG recommendations to induce labor and deliver the baby, in hopes of resolving Jackie’s elevated blood pressure, proteinuria, and petit mal seizures. Jackie and her baby suffered the consequences of this decision, which included complications, co-morbidities, and physical injuries. Jackie was also emotionally traumatized by her birth experience and subsequently experienced symptoms of PTSD and depression. She was formally diagnosed with these conditions by a psychiatrist.
The Necessity of Informed Consent
When Jackie was admitted to the hospital for her induction of labor, she signed a general “Consent to Treat” form. No special care was taken to explain the content of the form, despite the fact that Jackie has a mild intellectual disability and does not read quickly or comprehend written documents easily. When her doctor made the decision to take Jackie for a cesarean, the benefits, risks, timing, and alternatives (BRAT) were not explained to her, so it was not possible for her to give her informed consent to the procedure.
The necessity for informed consent, and its establishment as a matter of law in America, can be traced back to the US Syphilis Experiment. That experiment was conducted at the Tuskegee Institute in Alabama between 1932 and 1972 by the United States Public Health Service (PHS) and the Centers for Disease Control and Prevention (CDC) between 1932 and 1972. Called “The Tuskegee Study of Untreated Syphilis in the Negro Male,” this inherently racist experiment followed the progress of syphilis in Black men over 40 years, ostensibly to investigate if it affected Black men differently than white men.
The Black men were not told their actual diagnosis of syphilis, but were instead told they were being treated for “bad blood.” In fact, they were not being treated at all, even though the cure for syphilis—penicillin—had been discovered in 1928 by Alexander Fleming, was widely in use by 1943, and was the recommended treatment for syphilis by 1947. As a result of this failure to treat, the Black men in the study suffered horrifically from the progress of their disease, including co-morbidities such as blindness and mental illness, and many of them died.
When a venereal disease investigator in San Francisco named Peter Buxton found out about this experiment in the 1960s, he expressed his concerns to the US Public Health Service that it was unethical. A committee was formed to investigate the concerns, but ultimately, the study continued, “with the goal of tracking the participants until all had died, autopsies were performed, and the project data could be analyzed.” (Nix, Elizabeth 2020) Buxton leaked the story to a reporter, Jean Heller of the Associated Press, who published the story in July 1972. The resulting public outrage forced the government to shut down the US Syphilis Experiment at last. But “by that time, 28 participants had perished from syphilis, 100 more had died from related complications, at least 40 spouses had been diagnosed with it, and the disease had been passed to 19 children at birth” (Nix, Elizabeth 2020).
The revelations of how traditional Western medicine had broken faith with these Black men, mostly sharecroppers who lacked the financial resources with which to pay for a private doctor for treatment of their conditions, led to new laws and guidelines. These included stricter laws about requiring informed consent to treatment of any disease condition, the diagnosis for which must be told to the patient (Bazzano, et al. 2021). Informed consent is the cornerstone of the legal and ethical practice of medicine in America.
Yet when it comes to medical induction of labor, these national laws requiring informed consent are often not followed with pregnant women. Women are regularly induced without knowing the risks of induction to their babies or themselves. This was certainly the case for Jackie, a woman with an intellectual disability.
Restoring Trust through Narrative Medicine
Jackie needed to process her traumatic experience verbally with multiple friends, family members, and professional medical caregivers in order to come to terms with it. Her postpartum depression was severe, and included suicidal ideation. Yet, as the weeks passed, she made progress in physical and emotional healing until she reached a point of relative stability. She was helped through this by opportunities to tell her story repeatedly, to ask questions, to compare her experience to what had been documented in her medical record, and to express her feelings about it as she moved through stages of denial, anger, bargaining, depression, and acceptance (Kübler-Ross, Elizabeth, and David Kessler). This process involved “narrative medicine,” the attentive listening of skilled caregivers to Jackie’s story as a patient, with the appropriate responses of compassion and empathy, the benefits of which have been elucidated by Dr. Rita Charon (Charon 2001).
When Jackie became pregnant for a second time in 2021, her fears resurged. She refused to receive prenatal care in the county where she lived, specifically because she did not want to interact with her former Ob/Gyn, that doctor’s partners, or the hospital where she had her cesarean. Not until she moved out of state did she feel safe enough to seek out a doctor’s care.
Despite her desire for a VBAC waterbirth at home, Jackie’s second pregnancy has been assessed as high risk, fortunately not due to pre-eclampsia but, unfortunately, due to polyhydramnios. Jackie is currently scheduled for a repeat cesarean, to which she has agreed, because she fears that her cesarean scar will split open during a normal labor. Yet this time, she hopes to be awake during surgery—rather than under general anesthesia—and to meet her second baby and hold him immediately after the delivery.
Learning for Midwives
As a midwife-educator, I believe that we as midwives can learn a lot from Jackie’s experience. Some mothers have intellectual disabilities, but this does not automatically disqualify them from homebirth, if they retain the legal right to make their own medical decisions and do not have high-risk medical conditions. Midwives can serve such women well because midwifery practice is more congenial to meeting their needs than traditional Western medicine. That’s in part because midwifery emphasizes the importance of informed consent and uses attentive listening to the mother’s story, compassion, and empathy as a regular part of our practice. We are regularly involved in “narrative medicine,” whether we call it that or not, and patient-centered care.
We also have the education, training, and experience to recognize when a mother’s past birth experience involves physical and emotional trauma. We are able to make referrals to psychologists and psychiatrists for the treatment of the mothers in our care. As members of a medical team, we can provide additional educational and emotional support to traumatized mothers ourselves. We play an essential role in the healing mother’s preparation for birth. We can help her to make a birth plan and then to give birth peacefully.
Most of us already know the medical risks of induction and cesarean. Mothers who have experienced trauma in these medical processes often come to us for care for a subsequent pregnancy. Unfortunately, some medical conditions of pregnancy will necessitate co-care or referral for hospital birth rather than homebirth in order to ensure the safety of the mother and the baby. We cannot control the outcomes for these mothers in hospital settings where we are not practicing, but in the role of midwife-educators, we can give women the support and referrals that they need.
- Bazzano, Lydia A, et al. “A Modern History of Informed Consent and the Role of Key Information.” The Ochsner Journal 21(1): 81–85. www.ncbi.nlm.nih.gov/pmc/articles/PMC7993430/
- Block, Jennifer. 2008. Pushed: The Painful Truth about Childbirth and Modern Maternity Care. Boston: Da Capo Press.
- Charon, Rita. 2001. “Narrative Medicine: A Model Empathy, Reflection, Profession, and Trust.” JAMA 15: 1897–902.
- Goer, Henci. 1995. Obstetric Myths vs. Research Realities. Westport, Connecticut: Bergin and Garvey.
- Goer, Henci, and Amy Romano. 2012. Optimal Care in Childbirth: The Case for a Physiologic Approach. Seattle: Classic Day Publishing.
- Kübler-Ross, Elisabeth, and David Kessler. “Five Stages of Grief.” Grief.com. Accessed April 13, 2022. https://grief.com/the-five-stages-of-grief/.
- Mayo Clinic. “Inducing Labor: When to wait, when to induce.” Accessed April 13, 2022. www.mayoclinic.org/healthy-lifestyle/labor-and-delivery/in-depth/inducing-labor/art-20047557.
- Nix, Elizabeth. “Tuskegee Experiment: The Infamous Syphilis Study.” Updated December 15, 2020. Accessed April 13, 2022. History.com. www.history.com/news/the-infamous-40-year-tuskegee-study.
- Wagner, Marsden. 2008. Born in the USA: How a Broken Maternity System Must Be Fixed to Put Women and Children First. Berkeley and Los Angeles: University of California Press.